NH Challenge - Winter Edition

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NH Challenge - Winter Edition Powered By Docstoc
					   In order to accurately reflect the Governor’s budget, this is a late Winter edition.
                                                                                                                                                                                                  Nonprofit Org.
   In this Issue:
   What’s in the Governor’s Proposed Budget?  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .3                                                                                               U.S. POSTAGE
   When Too Much Information Is Too Much  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .4                                                                                                       PAID
   Hard Times for a New Hampshire Family  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .5                                                                                               Durham, NH
   Opinion: Intelligentsia or Family Advocates?  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .6                                                                                                 Permit No. 22
   Family Support — Crafts a Life  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .  .8




The New Hampshire Challenge
                                                   disability issues from a family perspective
                             published quarterly by: The New Hampshire Challenge, Inc. P.O. Box 579, Dover, NH 03821-0579
           Volume 22, Issue 3                                  © 2011 All rights reserved                                                                                                      Winter 2011



Gov . Lynch Abolishes Family Support
By Jack Krumm, Editor, The New Hampshire Challenge

                                                     because of the Lynch budget.                                 for Katie Beckett waivers,         Further, the Governor went      if your elected State Represen-
                                                     Items removed will include the                               SSI and Medicaid will be      back on his word to The New          tatives and Senators hear your
                                                     following:                                                   left to flounder on their     Hampshire Challenge that he          voice and insist on restoration
                                                                                                                  own.                          would not consider further




                                                                                                                                                                                                                         Cyan Magenta Yellow Black
                                                       • Total elimination of fund-                                                                                                  of this funding. Family Sup-
                                                                                                                                                consolidations of Area Agen-         port and Wait List funding is
                                                         ing for the waiting list. The                        • Parent to Parent support is
                                                                                                                                                cies. The Challenge interviewed      a non-partisan issue. It has
                                                         Governor’s budget will                                 under direct threat
                                                                                                                                                Governor Lynch in 2009 after         proven cost effective to the
                                                         re-establish the wait list for                       • Regional experts assisting      the full effect of John Stephen’s
                                                         young citizens with DD.                                                                                                     state of NH, and in point of
                                                                                                                families who have mem-          forced merger of the agencies in
                                                                                                                                                                                     fact was established by the very
                                                       • Cuts to In-Home Support                                bers with disabilities estab-   the North Country was realized.
                                                                                                                                                                                     conservative administration of
                                                         Programs. Young families                               lish Individualized Educa-      Stephen’s actions resulted in a
                                                                                                                                                                                     former Governor John Sununu.
                                                         now just starting to adjust                            tional Programs (IEPs)          net loss to the state of NH of
                                                                                                                                                nearly one million dollars.          Families have no choice now,
                                                         to children with DD will                             • Regional support to Parent                                           but to organize yet another gen-
                                                         not be supported in home.                                                                   The Governor appears in-
                                                                                                                Support groups                                                       eration of activists and defend


T
                                                                                                                                                tent to multiply this proven
        he family support move-                        • Drastic Cuts to Family                               • Technical assistance to         waste, by demanding ten area         their children from the political
        ment established long                            Support Programs, young                                parents while at medical        agencies be merged into seven.       expediency of removing fund-
        ago under the Sununu                             families who need techni-                              appointments or seeking              As of press time, the only      ing from our most venerable
                                                                                                                                                                                                                                1
Administration, has been zeroed                          cal assistance in applying                             guardianship.                   way funding can be restored is       citizens. n
out and abandoned by Gov. John
Lynch’s proposed budget. Gov-


                                                     Focus — Family Support
ernor John Sununu established
family support over twenty five
years ago in response to a prov-
en need to families who have
members with developmental                           By Jan Larsen, Executive Director, The New Hampshire Challenge Inc.




                                                     O
disabilities. Hard data gathered
and presented to the demanding                                ver 25 years ago the                               After much reflection I’ve     concept that looked at the indi-     medical model where the service
conservative Governor con-                                    concept of Family Sup-                        come to the conclusion that the     viduals in a family as one entity,   provider (doctor or other medi-
vinced him that family support                                port was unknown. I                           essence of real Family Support      not separating each of the family    cal professional) has knowledge
was a cost effective way for NH                      remember wanting to find help                          has nothing to do with a title      members. In this concept the         that the family doesn’t have so
to go to contain costs.                              for my family and wanting to                           or Medicaid reimbursement           individual member experiencing       the family needs the profes-
    Family Support consequent-                       help other families and all the                        but everything to do with the       a disability is only a part of the   sional to tell them what needs to
ly has enjoyed support through-                      while searching for someone                            attitude and focus of the staff.    group, so that any intervention      be fixed and dictating how this
out the Sununu, Gregg, Merrill,                      who would understand the dif-                          How Family Support staff relate     isn’t singled out to the one indi-   will be done.
Benson, Shaheen and two Lynch                        ferences in my family because                          to families and individuals with    vidual but is seen in the way that        Another aspect of Fam-
administrations.                                     my children had special needs.                         disabilities is the real make or    services to the individual affects   ily Support that is essential is
    Governor Lynch now has                           So much has evolved since the                          break point.                        the entire family.                   listening to the family in a non-
decided to abandon it.                               birth of the Family Support                                 I have written much about           The other concept applied       judgmental capacity along with
    Families who have mem-                           movement how does one reach                            the concept of family systems       to Family Support is that the        looking “outside of the box” or
bers with developmental dis-                         back to when the legislation                           theory and counseling as the ori-   family is an equal partner with      simply to use the community
abilities can now expect severe                      was passed and compare now                             gins of family support. Twenty      the service provider, not as need-
and hard hitting cuts in supports                    to then?                                               five years ago this was a new       ing “education or help” as in a                 Continued on page 2
            2                                                            The New Hampshire Challenge — Winter 2011



        Family Support                      providing care in the family
                                            home—Family Support.
                                                                                  But I never had a name for it
                                                                                  until Family Support became
                                                                                                                      ists today because of what has
                                                                                                                      been built over the last twenty
                                                                                                                                                          families involved proved time
                                                                                                                                                          and again that Family Support
        Continued from page 1                   I still have a hard time using    recognized.                         five years is to betray the very    was cost effective for NH.
                                            terms like “case load” and “cli-           The study committee that       foundations of Family Support            In the true spirit of Family
        resources that are available to     ent”, as I worked with families       researched what families needed     as established by the Sununu        Support we need to break out of
        all families. Families shouldn’t    encompassing a person with a          and became the basis of Family      administration. The conserva-       our present day box, and return
        need to pick and choose from a      disability who were not “cases,       Support was chaired by Kathy        tive and data driven Governor       to the simple truth that we must
        pre-screened menu of services,      clients’ or consumers”. My            Mandeville who wrote of that        of that time demanded proof that    seek guidance from today’s
        knowing the name of the pro-        daughter has for many years           committee “when all is said and
                                                                                                                      Family Support was cost effec-      families because only they can
        gram in order to be presented       stopped using the word “dis-          done, let there be more done
        with services as an option.                                                                                   tive and avoided much greater       tell us what Family Support
                                            abled’ as she feels being “differ-    than said.”
             When Family Support be-        ently able” really describes her;                                         long term costs. Imagination and    should look like in the present
                                                                                       After 25 years I believe
        gan the only service defined was    there’s no “dis” about her at all.    more is being done but I feel       looking outside the box with the    reality. n
        respite. At that time, not many         In this issue I have worked       the essence of the Family Sup-
        families even understood what       on essays describing ways to          port movement is at serious risk                                       The New Hampshire Chal-
        the term meant. While they may      relate to families that express       of being lost. I have studied                                          lenge is a quarterly publication
        not have defined it, they were      the focus on the Family Sys-          the process of how groups and                                          which disseminates in-depth
        grateful when offered a break.      tems Therapy/ Family Strength         movements progress, how they                                           information on disability is-
        They didn’t know to ask for a       approach to counseling. Again,        develop, how they work and                                             sues from a family perspective.
        “respite” from the responsibil-     with all families as I feel this is   how they die. Two groups that                                          Printed items do not neces-
        ity of caring for their family      the basis of the Family Support       passed away or became part of                                          sarily reflect the views of The
        member. When parents were           movement. My experiences              Family Support were Special                                            Challenge or its publisher, The
        offered an overnight at a hotel,    with my own family and my             Families United and the State                                          New Hampshire Challenge,
        the family didn’t have to ask       education predate Family Sup-         Arc.                                                                   Inc. The Challenge reserves
        for a “Respitality” stay, but the   port. I knew how I wanted my               Both these groups served a                                        the right to exercise editorial
2       empathy of the agency person        family to be treated, I wanted to     purpose but then became part of                                        judgment in the selection and
        meeting with the family was         engage with similar families to       the Family Support movement.                                           publication of materials.
        aware that going away overnight     help all of us figure out how best    That Family Support still exists
        with out their family member        to raise not only my children         is rare because of the natural        Contents of the newspaper are copyrighted by The New
Black




        would allow the couple to return    with special needs but my other       curve that occurs within a group      Hampshire Challenge, Inc. Some material may carry other
        with renewed energy to continue     child and to relate to my spouse.     or movement. Only once did the        copyrights as well (noted where appropriate). Permission is
                                                                                  Bureau offer training on what         granted to reprint articles by individuals and organizations
                                                                                  Family Support consists of as         serving people with disabilities provided credit is given to The
           “Parents need to                                                       a “course” on Family Support
                                                                                  where those who were unfa-
                                                                                                                        New Hampshire Challenge (and original author, if appropri-
                                                                                                                        ate) and no fee is charged. Permission is required to reprint

            be recognized as                                                      miliar with its constructs could
                                                                                  discover them.
                                                                                                                        material in a book, newsletter, electronic or any other format
                                                                                                                        which has a cost associated with it.
                                                                                       Since then I have come to
            special educators,                                                    believe that not only is attitude
                                                                                  a major factor in life, it must
                                                                                                                        The New Hampshire Challenge is printed four times a year,
                                                                                                                        and welcomes the submission of articles. Copy must be typed
                                                                                  be experienced, so in the sense       and may be mailed, faxed or e-mailed. Pictures are welcome.
            the true experts on                                                   that by educating someone
                                                                                  about Systems Theory / Family
                                                                                                                        Questions should be directed to the editor.
                                                                                                                        Advertising rates:
            their children; and                                                   Strength concepts, it can be ex-
                                                                                  pressed but the individual needs
                                                                                                                        Full page with color (on back page only)
                                                                                                                        Strip ads (on bottom of page)
                                                                                                                                                                               $700.00

                                                                                  to fully embrace the concepts.
            the professional                                                      One of my best friends talks
                                                                                  about her “Ah Ha” moment
                                                                                                                        2 inches high, 10 inches wide
                                                                                                                        2 inches high, 5 inches wide
                                                                                                                                                                               $100.00
                                                                                                                                                                                $50.00
                                                                                                                        Discounts available for ads run more than once.
            people—teachers,                                                      when she finally understood
                                                                                  what being disabled meant to
                                                                                                                        Founded by Janet M . Krumm
                                                                                  those labeled as such. There are
            pediatricians,                                                        some who either cannot relate
                                                                                  or who have not been exposed
                                                                                                                        Executive Director: Jan Larsen, (603) 742-0500
                                                                                                                        E-mail: asjkan603@hotmail.com

            psychologists,
                                                                                  to the concepts enough to have
                                                                                  their attitudes changed.              Jan Larsen is also the Point of Contact for Advertising.
                                                                                       Twenty five years ago, fami-     Editor: John. Krumm, (603) 742-9617 or (603) 502-9749
            and others—have                                                       lies were not given a list of op-
                                                                                  tions or vendors, they weren’t
                                                                                                                        Fax: (603) 749-0981, E-mail: stjjmk1971@gmail.com
                                                                                  asked to name a program; they         Staff Writer: Jamie Stephenson, (603) 362-5195
            to learn to be                                                        shared their day to day function-
                                                                                  ing and looked at the supports
                                                                                                                        E-mail: jamie_stephenson@verizon.net
                                                                                                                        Page Layout: JLM Graphics
            consultants to                                                        that would work for their family.
                                                                                       We need to return to this
                                                                                                                        Printed by: Concord Monitor
                                                                                  approach and look beyond the          The New Hampshire Challenge
            parents.”                                                             current reality to once again
                                                                                  seek options that haven’t even
                                                                                                                        P .O . Box 579
                                                                                                                        Dover, NH 03821-0579
                                            — Nicholas Hobbs, 1978                been imagined or tried yet.           Website: www.nhchallenge.org
                                                                                  To simply rely upon what ex-
                                                                 The New Hampshire Challenge — Winter 2011                                                                        3



What’s Cut in the Governor’s Proposed Budget?
By Wendy Thomas, Special to The New Hampshire Challenge




G
          overnor Lynch has          spending 2 percent for the rest      quality and quantity of services     tion (of FY 2011 level) in all         aged out of school they would
          proposed his 2012 –        of this year and by 8 percent        available. Also some individuals     contracts with SMS (Special            not have to wait longer than 90
          2013 state budget to the   next year. He also asked them        might end up traveling further to    Medical Services).                     days to start services. Without
Legislature. It is a budget, the     to come up with possible cuts        get required services.                   What this could mean:              the adult services many of the
Governor claims, that lowers         over the next few weeks. The                                              Some Special Medical Services          skills learned in expensive Spe-
the state’s cost structure below     Governor said he will review         Elimination of DD                    will be reduced or eliminated.         cial Education will be lost rather
that spent in 2008–2009 and          proposals and then begin imple-                                                                                  that built upon.”
which cuts programs, offices         menting them. “We’ll do what-
                                                                          and ABD Waitlist                     Family Support                              Eldredge suggested that
                                                                              The Governor’s proposed
and personnel to ensure state        ever we can to protect essential                                               According to the proposed         it would be beneficial for the
                                                                          budget contains no DD or ABD                                                people who will be making
government can meet its core         services,’’ he said.                                                      budget, the Family Support
                                                                          waitlist funds.                                                             these budget decisions to visit
responsibilities. The budget             What exactly are the pro-                                             Cost Center appropriation will
contains neither new taxes, tax                                               What this could mean:                                                   at an Area Agency and at those
                                     posed budget changes and how                                              be reduced by $174,000 in the
increases or one-time funds.                                              With no funds for waitlist, this                                            places providing Mental Health
                                     might they affect you?                                                    first year of the budget and by
     Republican leaders in the                                            could mean that a person might                                              services so they could follow the
                                         In Developmental Services                                             $1.1 million in the second year
House and Senate have already                                             have to wait longer than the                                                staff for a day and meet some of
                                     (BDS) the Governor has pro-                                               of the biennium.
said they will not support any                                            current 90 days for required ser-                                           the clients served before they
                                     posed the following reductions                                                 What this could mean:
new or higher taxes and be-                                               vices. Without a waitlist some                                              voted on the proposed cuts.
                                     from the agency maintenance                                               Deep cuts like those proposed
cause the money has to come                                               people have reported waiting for                                                 “My sincere hope is that
                                     and change budget:                                                        are going to mean a reduction
from somewhere, this leaves                                               years to get services.                                                      the NH House and Senate will
                                                                                                               of both services and staff in the                                            3
the Governor considering some        Rate Increase                        Pilot Program                        Family Support Cost Center.            exercise their collective wisdom
fairly drastic cuts to existing                                                                                                                       and common sense to see that
programs.                            Removed                                   The legislature had directed
                                                                                                               Medicaid Managed                       the wait list and Family Sup-
     “It’s very difficult to imag-        The Governor wants to           BDS to include a new program                                                port will be fully funded. Why
ine a scenario totaling $140         remove the 3% rate increase to       in its budget for children con-      Care                                   should New Hampshire’s most




                                                                                                                                                                                           Black
million in savings that won’t        assist providers with the increas-   sidered medically frail. The              The Governor ’s budget            vulnerable population’s health
include some layoffs,’’ the Gov-     ing costs of wages, insurance,       funding for this program was         includes a substantial savings         care have to depend on what
ernor told reporters when an-        etc. from the BDS budget.            removed by the Governor’s            (over $30 million) by moving           political party is in power?” said
nouncing the planned cuts.                What this could mean:           proposal.                            NH Medicaid from a “fee for-           Eldredge.
     The Governor attributed         With no increase will likely              What this could mean:           service” model to a Medicaid                In the coming months, the
the State’s financial shortfall      result in the layoff of existing     Children considered medically        Managed Care Model.                    House and Senate will each pass
to lagging revenues during the       personnel.                           frail might not receive the re-           What this could mean:             versions of the budget which
recession, a state Supreme Court                                          quired services they need in a       It is still unclear at this point      will then be sent back to the
ruling denying the state’s right     Reductions in                        timely fashion.                      how it will directly affect de-        Governor for signature or veto
                                                                                                               velopmental services. There are        before July 1st. n
to $110 million from a surplus       “Administrative                      In Home Support                      several different types of Man-
insurance fund, and increasing
demand for social services.          Costs”                               Waiver                               aged Care Models and it seemed
     “With this budget, we con-          The Governor has cut
                                                                              There are significant cuts
                                                                                                               clear the legislature is going to         Enclosed is
tinue re-thinking every aspect       $900,000 (General Fund) $1.8                                              grant DHHS significant latitude
of state government. We have         million in total funds from
                                                                          (nearly $2 million over bienni-
                                                                          um) to the IHS waiver program.
                                                                                                               to select which approach they             a donation
pored over every line in every       the second year of the budget,                                            feel is best.
budget. We’ve asked not only         (beginning July 1, 2012). The
                                                                              What this means: The cuts
                                                                                                                    In response to the Gover-             envelope.
                                                                          will result in reductions to the
                                     proposal is that savings would                                            nor’s proposed budget cuts, Pete
whether a program was wor-
thy, but also whether it was the     be achieved by eliminating three
                                                                          amount of spots available on
                                                                                                               Eldredge whose adult daughter                Please
                                                                          the waiver and a reduction in
most important thing for us to
continue to do as a state. For
                                     area agencies.
                                         What this could mean: If
                                                                          budgets for children currently
                                                                                                               has benefited from receiving
                                                                                                               state services commented. “Why
                                                                                                                                                            donate
                                                                          on the In Home Support waiver.
programs that we believe should
continue, we asked ask how they
                                     three area agencies were closed
                                     then their workload would need
                                                                                                               would the governor want to re-
                                                                                                               turn to the days of the dreaded
                                                                                                                                                         generously
                                                                          SMS (Special
could be done more efficiently,”     to be consolidated with the                                               wait list for services? Only four          to The NH
Governor Lynch said.                 remaining open area agencies’        Medical Services)                    years ago he saw the wisdom of
     Governor Lynch advised          workload. Increased workload             The Governor ’s budget           fully funding the wait list so that       Challenge.
agencies to plan on reducing         could potentially impact the         proposal includes a 5% reduc-        when persons with disabilities



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            4                                                           The New Hampshire Challenge — Winter 2011




        When Too Much Information Is Too Much
        By Wendy Thomas, Special to The New Hampshire Challenge




        T
                here is no doubt the in-    saving outlet. For some, though          I have yet to take down a          There is a difference between          are valid reasons for blogging
                ternet can serve a great    it may just border on breaching     post of which one of my children        documenting a child’s medical          about a difficult situation. But
                purpose when you have       confidentiality and the rights of   objects but if the day comes, it        struggle and complaining about         if you are writing to blow off
        a person with a disability in       the person being blogged about.     will be taken down with no argu-        it, or even worse, using it to         steam, if you are writing in anger
        your life. Using the web you can         As a blogger who writes        ment on my part. Their privacy          garner sympathy for yourself.          against someone or something,
        look up information and you can     about my children I am always       trumps my writing any day.              Often the line is crossed when         you might want to wait a day
        find a supportive community of      aware of saying too much and             If you spend any time on the       the purpose of the blog moves          or two before you click on that
        people who might be experienc-      giving away too much infor-         internet you’ll soon find out that      from informing others or solicit-      Publish button. I’ve seen many
        ing some of the same things you     mation. I’ve written about my       this is not always the case. Many       ing help from others and instead       blog posts that in hind site only
        are going through. The internet     children being locked into our      parents of children (disabled and       becomes one of “poor me.”              serve to alienate the very audi-
        is a great way to try and figure    henhouse, about some of the         not) feel that it is their privilege,        Family stories have long          ence they are trying to reach.
        out what it was you didn’t know     silly things they’ve said and I     their First Amendment protected         provided grist for entertainment           Just because others do it,
        and to many people who might        have even blogged about their       right to post anything they want        and the adventures of children         you don’t have to .
        be isolated and who are feeling     dyslexia. Although I write about    on the internet is more impor-          can be particularly charming.              There is a trend in cyber-
        like no one understands a virtual   my children’s experiences, I        tant than anything else. If they        And while I’m not suggesting           space to outdo each other. For
        community can literally be a        always try to present them as a     experience it, it deserves to be        censorship here, I’m certainly         example, there are mommy
        life saver.                         lesson, something from which        documented.                             suggesting taking a little aware-      bloggers who seem to get a thrill
             The internet even allows       we can all learn. I try to write         This is not to say that blog-      ness and responsibility for your       detailing every horrible moment
        you to blog (journal online)        with respect for my children        ging isn’t a tremendous tool            writing especially when it in-         of their day. Don’t fall into the
        about your situation which for      remembering that they have          when you are handling a tough           volves children.                       trap where you think you need
4       many is a creative and sanity       rights.                             situation. I’ve read many blogs              Some guidelines to help           to compete. Just because one
                                                                                of parents with children who            you figure out if too much is          person is stepping over the line
                                                                                have terrible disabilities and          too much when writing for the          doesn’t mean you need to.
           “The longer I live, the more I realize the                           illnesses and who have with             internet include:                          Is web-journaling the
           impact of attitude on life. Attitude to me
Black




                                                                                grace documented their family’s              Ask yourself if the per-          right venue for you?
           is more important than facts. It is more                             experiences. I’ve seen blogs of         son of whom you are writing                When you click on publish
           important than the past, than education, than                        severe medical conditions com-          would object to the informa-           anyone in the world can now
           money, than circumstances, than failures,                            plete with medical photos (with         tion a few years from now .            read your writing. If you are
           than success, than what other people think                           “disturbing nature” warnings on              A wetting accident might          not ready for that try keeping a
           or say or do. It is more important than                              them). Because of one particular        sound funny now (oh the incon-         private journal or consider blog-
                                                                                blog, I donated to a cure for the       venience and embarrassment it          ging under an anonymous or a
           appearance, gift, or skill. It will make or break
                                                                                child’s disease of which I hadn’t       caused you in the middle of the        pen-name. If you choose this
           a company, a church, a home. The remarkable
                                                                                even known existed prior to             grocery store) but as that child or    option be sure to not include any
           thing is we have a choice every day regarding                        reading the blog. These blogs           even in some cases adult moves         details that could identify you or
           the attitude we will embrace for that day. We                        felt like education and didn’t          on do they really want that expe-      your situation. Journaling is an
           cannot change our past…we cannot change                              feel like I was intruding on a          rience immortalized for all time?      incredibly therapeutic way to
           the fact that people will act in a certain way.                      child’s privacy. There is a great       Think about the repercussion of        handle a stressful situation just
           We cannot change the inevitable. The only                            deal to be said about educating         what you write down the road.          proceed with caution.
           thing we can do is play on the string we have,                       others so that they can “walk                Ask yourself the purpose              And lastly one of my friends
           and that is our attitude. I am convinced that                        a mile in your shoes”. Those            of your writing .                      who blogs often recommends
                                                                                blogs actually serve a purpose               Are trying to share valu-         the “Nana test.” Is this post
           life is 10 percent what happens to me and
                                                                                to enlighten us all.                    able information? Asking for           something your Grandmother
           90 percent how I react to it. And so it is with
                                                                                     But I have also read blogs         information on a certain subject?      would approve of? If not think
           you…we are in charge of our attitudes.”                              where parents record the most           Trying to share what it’s really       twice, but if you think she would
                                                     — Charles Swindoll         intimate things about their             like? Reaching out for how other       heartily approve—then by all
                                                                                children or even themselves.            people have coped? All of those        means write on. n



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                                                                    The New Hampshire Challenge — Winter 2011                                                                         5



The Weithman Family—Hard Times
for a New Hampshire Family
By Wendy Thomas, Special to The New Hampshire Challenge




D
          orothy Weithman settles     demonstrator in local Grocery           recently starting using the local    getting a yearbook. Dorothy un-      Dorothy, “but he’s used to us
          down on the couch, her      stores and as a substitute teacher      food panty in order to feed ev-      derstands how important these        saying No. Cassie also had a
          husband, Mark on an ad-     in Middle school and High               eryone and they have applied for     things are to the kids. “We’re       large gift list, she’s used to hav-
joining couch. We’re in a ground      School. She can’t take a full           fuel assistance. “It isn’t an easy   going to make sure that she          ing gifts given by sponsors. And
floor basement room, VCR tapes        time job because of some of the         thing to swallow one’s pride and     does these things” said Dorothy.     Ariel wouldn’t ask for anything.
line a wall surrounding a TV, the     kids’ anxiety needs. “I need to         ask for help.” said Dorothy.         “And somehow we’ll make sure         She didn’t want to add to any
end tables have tasteful decora-      be here when they come home                  The kids all have needs not     Max will get a class ring.”          expenses.
tions on them. The room is clean,     from school.” she said.                 currently being met. Ariel is a           There are also medical pri-          Mark has 20 weeks left to go
well kept, there is a sense of dig-        Cassie who was adopted             Senior who is currently looking      orities that the kids need, the      on his unemployment benefits. At
nity in their welcoming me here.      when she was 16 after being             at colleges and wants to study       family was going to buy oil with     some point, the benefits are going
Mark starts off first “I wish we      fostered with the Weithmans for         dance music and theater. She’s       their tax refund but instead they    to run out. “Are we still going to
could just know what it is we’re      6 months, has anxiety issues and        motivated, she gets good grades      got braces for Max. “He needed       be able to pay the mortgage?” He
supposed to know” he blurts out       needs to be constantly reassured.       and she may do well with schol-      braces.” said Dorothy.               asks. “If we can’t we’ll have to
clearly frustrated. “We’re so new     She has speech delays and has a         arships said Dorothy. Cassie              Christmas time was particu-     move out, but where do you go? I
to this. It’s like when I took a      1-on-1 para assigned to her at her      is a Junior who splits her time      larly tough this year. “Max al-      just don’t know” he said shaking       5
class on Microsoft Outlook and        school. “We don’t know exactly          between Alvern High School and       ways wants everything,” laughs       his head. n
the teacher stood at the front of     where her delays are, they’re still     Merrimack High School and who
the room and asked us—what is         trying to figure that out. But we       plans to stay in the public school
it that you want to know about
Outlook? Well considering I
                                      don’t treat her as some one with
                                      special needs.” Said Dorothy, “We
                                                                              system until she is 21. “She might
                                                                              end up going to a community
                                                                                                                      ABLE NH




                                                                                                                                                                                              Black
didn’t know anything about the        just treat her like one of the kids.”   college to study Early Childhood        By Jan Larsen, Executive Director, The NH Challenge
software, I didn’t even know               The kids have Heath for            Education, she’s so good with


                                                                                                                      I
what to ask to find out about it.     Kids benefits and Cassie gets           children.” said Dorothy.                    have written about the        help all the citizens of our
We’re in the same boat here.”         Health care benefits from Mass               After taking a class on As-            new grassroots advocacy       State who rely on Medicaid
     The Weithman family has          Health. “Thank God for Healthy          pergers to maintain her foster              group for which I have        for health care & services.
every right to feel frustrated.       Kids.” said Dorothy “Ariel had          license, Dorothy recognized             had the privilege of being a      ABLE NH held an organiza-
After working all their lives,        ear issues and also has TMJ—            similar behavior in her son. She        founding member. The ac-          tional conference on January
raising two children, Ariel, 18       her mouth guard was fully cov-          is currently trying to see if Max       ronym stands for Advocates        23rd where chapters from
and Max, 15 of their own, and         ered.” Cassie although covered          can be evaluated for Asperg-            Building Lasting Equality in      different areas within the
recently adopting a teenager,         by healthy insurance needs to           ers. “It wouldn’t change what           NH. We as a movement can-         state elected members of their
Cassie,17 with Special Needs,         get all her treatment in Massa-         is done for him in school but it        not stress enough how much        group to join the ABLE NH
the family now finds itself on the    chusetts. She also receives full        would help us to help him learn         this movement is needed!          board members along with
brink of losing their home and        benefits through Gateway and            how to function in a world with              The legislative year and     the entire convention electing
becoming dependent on State           medicaid funding until she is 18        people. He doesn’t know how to          budget process has begun          two at large board members.
Aid. They don’t know where            at which point she will receive         ask for help.” she said.                and the information from          The entire group walked to
they can go for help.                 adult medicaid benefits.                     “Silly as it sounds” added         both may be the most dev-         downtown Concord to ex-
     Mark was laid off 7 months            Neither of the parents are         Mark, “if he is diagnosed, it will      astating since the beginning      press their opinions about a
ago from his position as a Qual-      covered under a health insur-           give us peace of mind. It will          of the Area Agency system.        business on the first floor
ity Engineer. His primary expe-       ance. “We couldn’t afford CO-           mean I’m not going crazy, that          The proposed budget doesn’t       of the Phoenix hall build-
rience is that of an Electronic       BRA, said Dorothy “As it is we          there really is an issue here.”         just reverse gains made, it       ing where the Bagel Works
Technician. He’s been looking         can barely pay for our groceries”.           Ariel, the oldest is cur-          dismantles the system. ABLE       Café has 2 stone steps mak-
for another job and although he            “We’re just going to have          rently a Senior at Merrimack            NH is a cross disability grass-   ing that business not handi-
has had a few nibbles and even        to be very careful” added Mark.         High School. Teens often have           roots organization which can      capped accessible . See more
a few interviews, has not been             Apparently the family              a difficult time understanding          hopefully have some impact        about ABLE NH and consider
able to find anything. Dorothy        makes too much in unemploy-             financial instability within a          on not only the developmen-       joining their efforts at their
has taken part time jobs here and     ment benefits to qualify for            family. This is the time when she       tally disabled but can also       website www.ablenh.org. n
there. She’s worked as a product      Sate food assistance. They have         should be going to the prom and



                                 vices is                                     proud to support The New Hamp
                    om munity Ser                                                                                                                 shire Ch
            e Sky C                                                                                                                                       allen
                                                                                                                                                               g                 e!
      On
     The Seacoast’s Area Agency for 27 Years
           Infancy Through Adult Life
            www.oneskyservices.org
            6                                                           The New Hampshire Challenge — Winter 2011




        Sports for All Seasons and All Abilities
        By Jan Larsen, Executive Director, The New Hampshire Challenge




        T
               he New Hampshire              cal and/or developmental dis-        is much more to this program       offered, making it a year round.   of differing abilities, adapting
               Handicapped Sports As-        abilities (www.nehsa.org). The       than one would expect. There       The program offers assistance      to the participant’s abilities
               sociation (NEHSA ),           building off to the right when       are more options for adapted       with these different types of      not their disabilities. The vol-
        located at the base of Mount         you enter the ski area houses the    sports beyond skiing, tubing,      recreation and the program is      unteers who aided the students
        Sunapee in Newbury, NH, pro-         program, having all the equip-       snowboarding with summer           not just for those who have        would say they gained as much
        vides year-round adaptive sports     ment the skiers need, including      sports such as kayaking, wa-       physical disabilities. But even    from assisting the students and
        programs to persons with physi-      specialized equipment. But there     terskiing, and rowing being        more than recreation for those     adults in the program than the
                                                                                                                     who participate and those who      learners did. I was pleased
                                                                                                                     volunteer the program is about     when the director, Tom Kersey

                                             Opinion                                                                 growth, independence and other
                                                                                                                     life lessons.
                                                                                                                          The day I visited the ski
                                                                                                                                                        used “differently abled” when
                                                                                                                                                        he spoke about the participants.
                                                                                                                                                        My daughter uses this descrip-



           Intelligentsia or
                                                                                                                     slope was graduation day for       tion and language which is
                                                                                                                     a class of special education       becoming more a part of our
                                                                                                                     students. Those graduating         culture so when I heard Tom use
                                                                                                                     were given certificates from       it I warmed to him immediately,



           Family Advocates?
                                                                                                                     the Mount Sunapee program          knowing that he valued the
                                                                                                                     on this bright day in March.       participants and would teach
                                                                                                                     Some were celebrating the last     that respect to the programs’
                                                                                                                     day of ski school for the year     volunteers, who in turn teach
6                                                                                                                                                       the general public as the word-
           By John M. Krumm (Jack), Editor, The New Hampshire Challenge                                              while others’ were graduating
                                                                                                                                                        ing the ripples outward.


           I
                                                                                                                     from the program and also from
                ntelligentsia are a social    of us who are poor products of          Now because of DD in-          high school. These students had          Being the resource guru
                class of people engaged       public education, “It is never     telligentsia, even the Area         successfully participated in the   that I am, I knew that other
Black




                in complex, mental and        right to attack your family in     Agency system is about to           ski program but it was clear as    mountains have “handicapped”
           creative labor directed to the     public.”                           come under attack. In truth,        each student was given their di-   programs, especially those open
           development and dissemina-              Our “friend” Governor         for the last six years or so, our   ploma that this was about more     to our veterans who come home
           tion of culture, encompass-        Lynch just abandoned the           best friend was John Stephen.       than ski lessons. The director     from the war with physical dis-
           ing intellectuals and social       bedrock and foundation of DD       He openly proclaimed us the         and volunteers spoke of how        abilities. I have seen programs
           groups. Intelligentsia (from       success in NH these last 25        enemy, and came at us head          wonderful their experiences had    on TV about those vets, again
           Russian интеллигенция), en-        years by zeroing out Family        on. When he needed a pub-           been and how incredible it was     offering more than skiing les-
           compassing intellectuals and       Support. Family Support was        licly funded source of income,      for them as they witnessed the     sons. Another program, located
           social groups close to them.       designed and implemented by        he would run for office and         joy these children and adults      at Loon Mountain is now called
           The term was applied mostly        GOP conservatives, foremost        galvanize the DD community          expressed as they embraced a       New England Disabled Sports
           in the context of Russia and       among them former Governor         who recalled his love of us         new experience resulting in in-    (www.nedisabledsports.org)
           later the Soviet Union, and        John Sununu. They knew a           “millionaires who abuse the         creased confidence and a sense     and they offer boundary-free
           had a narrow meaning based         bargain, and for 25 years NH       system.” John Stephen at            of empowerment. The curricu-       outdoor recreation both winter
           on self-definition of a cer-       has rode the wave.                 least, kept the glow of DD          lum wasn’t about academics; it     and summer also providing both
           tain category of intellectuals.         Gov. Lynch on the other       activism alive.                     was about subjects much more       equipment and instruction as
           (Source: Wikipedia)                hand, just red lined your chil-         The future now—if we are       important than that. It was        well. I hope to see you all on the
               While our enemies ex-          dren’s futures. He, who our        to have one—belongs to a new        about learning to overcome fear,   mountain. I’ll be the one hang-
           ploited it, the Developmental      intelligentsia supported, threw    crop of GSCPAs or perhaps           learning social skills, and the    ing on for dear life!
           Disability (DD) community          us under the bus. His parties      NH ABLE. Listen to no one           freedom of being able to learn           Check with any ski area
           drank a very special brew of       own self serving political         who is paid by the system, no       from participating with others     near you for additional programs
           cool aide from “our betters.”      agenda was more important          matter what set of alphabet         without disabilities and being     and services. n
           We have been encouraged            than your children. Fran Wen-      soup they identify themselves       just like everybody else on the
           to work for one set of can-        delboe would never do what         by. Parents and families who        Mountain, enjoying the freedom
           didates, and to ignore others      Lynch just did to us.              have done so much before            of going down hill. Tom said he       Enclosed is
           based upon labels such as               And, we have tolerated        must organize on their own          could get anyone willing to go
           conservative, liberal or inde-     those in our DD community          terms. Let DD Intelligentsia        up the mountain, back down the        a donation
           pendent. Worse, those among        who openly challenge the           control our actions, and the        mountain.
           us who remained activists          Area Agency system, while          devil will dance.                        I was surprised, which            envelope.
           drew “enlightened criticism”       having nothing—absolutely               Families must organize.        may show my bias, that most
           for our often bad manners.         nothing—to offer to replace        Families and parents must           of the students that day were            Please
           Perhaps foremost among             it. Parents and families with      hold those who sold our chil-       not physically disabled. I was
           those rebuked were GSCPAs          DD in NH hear this: WHEN           dren’s futures accountable.         informed that students with a            donate
           like Pete Eldredge or others       ALL ELSE FAILS, YOU                Ignore anyone who would of-         diagnosis of autism comprise
           who could be relied upon to        WILL RELY UPON THE                 fer up Family Support or our        20% of the student population,        generously
           come to the defense of the         AREA AGENCY SYSTEM .               Area Agencies for their own         the largest with a specific dis-
           Area Agency system. Our            If you have doubt read Jo-         political futures or organiza-      ability (www.autism-society-           to The NH
           Intelligentsia failed to learn     seph Krumm’s story in this         tional budgets. Your children       nh.org/resources.html). On the
           what our mothers taught those      edition.                           depend on you. n                    mountain I learned the program        Challenge.
                                                                                                                     is open to those with all types
                                                                    The New Hampshire Challenge — Winter 2011                                                                      7




Bits and Pieces: Rambling Thoughts
from the New Executive Director
By Jan Larsen, Executive Director, The New Hampshire Challenge, askjan603@hotmail.com

                                        reaction of parents when they        join and participate by paying       be available to anyone interested   newspaper, both positive and
                                        are told their child has special     the $20.00 for membership. To        in information from a family        negative. Constructive criticism
                                        needs. The grief is related as the   join visit the website at www.       prospective. We encourage feed-     helps everyone learn and inform
                                        grieving over the “death of the      arcmanchester.org.                   back from all our subscribers       which is as always the focus of
                                        dream of the perfect child” As           I want the NH Challenge to       on any and all the topics in this   the NH Challenge. n
                                        with many topics in the field this

                                                                             Welcome to Holland
                                        idea is not accepted by everyone.
                                        The two essays reprinted here
                                        (Welcome to Holland and Liv-
                                        ing in Holland) have been used       By Emily Perl Kingsley, 1987



                                                                             I
                                        to express a different experience.
                                                                                  am often asked to describe      “What do you mean Holland?? I       look around…and you begin to
                                        The second essay speaks to the
                                                                                  the experience of raising a     signed up for Italy! I’m supposed   notice that Holland has wind-
                                        feeling of partnership and sup-
                                                                                  child with a disability—to      to be in Italy. All my life I’ve    mills…and Holland has tulips.
                                        port within the community of
                                                                             try to help people who have not      dreamed of going to Italy.”But      Holland even has Rembrandts.
           Jan Larsen                   parents, professionals and now                                                                                                                        7
                                                                             shared that unique experience to     there’s been a change in the             But everyone you know is


T
                                        adult self advocates that becomes    understand it, to imagine how it     flight plan. They’ve landed in      busy coming and going from
         he good thing about            a welcome support along life’s       would feel. It’s like this…When      Holland and there you must stay.    Italy…and they’re all bragging
         being a pack rat and           journey. This newspaper prints       you’re going to have a baby, it’s    The important thing is that they    about what a wonderful time
         a historian is that you        about 10,000 copies sent to all      like planning a fabulous vacation    haven’t taken you to a horrible,    they had there. And for the
don’t need a good memory, just




                                                                                                                                                                                             Black
                                        50 states and several countries.     trip—to Italy. You buy a bunch       disgusting, filthy place, full of
a good filing system. And while         That’s quite a support group!                                                                                 rest of your life, you will say
                                                                             of guide books and make your         pestilence, famine and disease.
my memory has lapses known as                                                                                                                         “Yes, that’s where I was sup-
                                                                             wonderful plans. The Coliseum.       It’s just a different place.
senior moments, as long as my           The Quality                          The Michelangelo David. The               So you must go out and buy
                                                                                                                                                      posed to go. That’s what I had
filing system holds up I can find                                                                                                                     planned.”And the pain of that
the history we need to remem-
                                        Council                              gondolas in Venice. You may          new guide books. And you must
                                                                                                                                                      will never, ever, ever, ever go
                                             The Quality Council for De-     learn some handy phrases in          learn a whole new language.
ber & reflect on with the new                                                                                                                         away…because the loss of that
                                        velopmental Disabilities has be-     Italian. It’s all very exciting.     And you will meet a whole
information from the groups like                                                                                                                      dream is a very, very significant
                                        gun to visit the 10 Area Agencies    After months of eager anticipa-      new group of people you would
ABLE NH and committees like                                                                                                                           loss. But…if you spend your life
                                        to bring the question of Qual-       tion, the day finally arrives. You   never have met.
the Quality Council.                                                                                                                                  mourning the fact that you didn’t
                                        ity to the families, clients, Area   pack your bags and off you go.            It’s just a different place.
     The material I have cov-                                                                                                                         get to Italy, you may never be
                                        Agency employees, vendors as         Several hours later, the plane       It’s slower-paced than Italy,
ers the history of the disability                                                                                                                     free to enjoy the very special,
                                        to the principals that measure       lands. The stewardess comes          less flashy than Italy. But after
movement along with newer doc-                                                                                                                        the very lovely things…about
                                        quality in services. This isn’t      in and says, “Welcome to Hol-        you’ve been there for a while
uments from these committees
                                        quite as easy as it would seem       land.” “Holland?!?” you say.         and you catch your breath, you      Holland. n
with both a reflection on our past
                                        because quality may mean dif-
but the concerns for our future. I
struggle with organizing all the
material I have accumulated be-
                                        ferent things to many people. By
                                        sharing the work of the Council,
                                        the members want to engage ev-
                                                                             Living in Holland
cause every time I start to sort this                                        By Anonymous
                                        eryone to not only define quality


                                                                             I
material by subject I find myself
                                        but to strive to improve supports         have been in Holland for        learned a new language and I        and grew to become a land
reading the articles! In my con-
                                        to everyone receiving services            over a decade now. It has       slowly found my way around          of hospitality, reaching out to
tributions to this edition, I have
                                        and those providing the ser-              become home. I have had         this new land. I have met others    welcome, to assist and to sup-
tried to balance information on
                                        vices. The reports of the Quality    time to catch my breath, to settle   whose plans had changed like        port newcomers like me in this
topics for parents with young or
                                        Council can be found at www.         and adjust, to accept something      mine, and who could share my        new land. Over the years, I’ve
newly diagnosed children along
                                        dhhs.nh.gov and putting quality      different than I’d planned.          experience. We supported one        wondered what life would have
with those of us who have been
                                        council in the search section.            I reflect back on those years   another and some have become        been like if I’d landed in Italy as
in the field for some time. When
I left Moore Center Services I                                               of past when I had first landed in   very special friends. Some of       planned. Would life have been
intended to retire but somehow
                                        The Arc of Greater                   Holland. I remember clearly my       these fellow travelers had been     easier? Would it have been as re-
I joined those who attempted            Manchester                           shock, my fear, my anger—the         in Holland longer than I and        warding? Would I have learned
this before and I find I am much             The National Arc has            pain and uncertainty. In those       were seasoned guides, assisting     some of the important lessons I
more active than I planned on           launched a rebranding effort to      first few years, I tried to get      me along the way. Many have         hold today?
with support groups, committees         adhere to the language chances       back to Italy as planned, but        encouraged me. Many have                 Sure, this journey has been
and—oh yeah—being appointed             both within the states and with      Holland was where I was to           taught me to open my eyes to        more challenging and at times I
as Executive Director of the NH         the National Arc. The Arc of         stay. Today, I can say how far I     the wonder and gifts to behold      would (and still do) stomp my
Challenge.                              Greater Manchester strives to        have come on this unexpected         in this new land. I have discov-    feet and cry out in frustration
     Jack and I have written about      provide recreation by sponsor-       journey. I have learned so much      ered a community of caring.         and protest. And, yes, Holland
our experiences with the loss of        ing 6 dances a year. The Arc has     more. But, this too has been a       Holland wasn’t so bad.              is slower paced than Italy and
family. The grief experience is         expanded the localities it serves    journey of time. I worked hard.           I think that Holland is used   less flashy than Italy, but this too
sometimes used to express the           to include anyone who wishes to      I bought new guidebooks. I           to wayward travelers like me        has been an unexpected gift. n
                                8                                                           The New Hampshire Challenge — Winter 2011




                            Family Support — Crafts a Life
                            By Jack Krumm, Editor, The New Hampshire Challenge                                                           A photo essay about Family Support building a life

                                                                                                     My first conversation                                                  the information out to the other
                                                                                                     with Donald                                                            families throughout the state.
                                                                                                     Shumway was from                                                            Joe’s life struck new direc-
                                                                                                     a Minuteman Launch                                                     tions never before attempted by
                                                                                                     Control Center such
                                                                                                                                                                            children with DD. He was the
                                                                                                     as this one hundred
                                                                                                     feet below North
                                                                                                                                                                            first child to be integrated into a
                                                                                                     Dakota.                                                                regular pre-school setting, after a
                                                                                                                                                                            knock-down drag out Individual
                                                                                                                                                                            Development Program (IDP)
                                                                                                                                                                            meeting with Dover School offi-
                                                                                                                                                                            cials. At that time, the special ed-
                                                                                                                                              Jan Nisbet, Pdh would
                                                                                                                                                                            ucation coordinator proclaimed
                                                                                                                                              have a tremendous effect
                                                                                                                                              on both Joe’s life and the    the IEP meeting would be over in
                            These could be the eyes of frustration, but because of Family                                                     life of his Mom.              50 minutes. Four days later, after
                            Support they turned into eyes guiding Joe Krumm through a very                                                                                  grueling and intense negotiation,
                            well crafted life.                                                                                                                              Janet and I had secured the IEP



                            D
                                                                                                                                                                            Joe needed.
                                     uring a frozen Easter      launch control center to call var-                                                                               Joe’s IEPs and education
                                     season, in 1985 Joseph     ious states to determine which                                                                              plans throughout his Dover
                                     Bernard Krumm was          one would give Joe maximum           agencies in the area and thought    forward thinking needed to craft   School System days were helped
   8
                            born at Grand Forks General         freedom and respect, as well as      Joe’s needs would best be suited    good lives for people with DD      by technical assistance from the
                            Hospital, Grand Forks, North        an honest chance to craft a life.    at what was then called Region      in a newspaper. The New Hamp-      Institute on Disability (IOD), our
                            Dakota. The base Hospital was            It was from this launch         9, now called “Community            shire Challenge was being born.    Area Agency team, the Disabil-
Cyan Magenta Yellow Black




                            full, and Joseph’s mother Janet     control center, I placed a call to   Partners” in Dover. Two out-        The newspaper captured Janet’s     ity Rights Center (DRC), and the
                            was sent in labor to the civilian   New Hampshire and spoke to           standing people started work        research, and communicated         Parent Information Center (PIC).
                            hospital eighteen miles away.       Don Shumway in the summer            with our family, Deirdre Watson
                            Providence was already at work      of 1985. I gave my report of         and Hugh Philbrick. To this
                            in Joe’s early hours. He would      that conversation to Janet, and      day, Hugh and Deirdre monitor
                            need the care and access to a       she determined that Pease Air        Joe’s life. It has been a 25 year
                            children’s cardiologist which the   Force Base and Boston Chil-          relationship.
                            civilian hospital provided. Jo-     dren’s Hospital should be where           Once in Dover, Joe recov-
                            seph Bernard Krumm was about        we would stage Joe’s corrective      ered from surgery and his family
                            to be born with down syndrome       heart surgery and start to build     established a good working rela-
                            and a congenital heart defect.      his life.                            tionship with his Family Support
                                 Janet encouraged me to use          When we settled at Pease        team. We found his needs quick-
                            “down” time at my Minuteman         AB, we looked around the area        ly centered on communication
                                                                                                     and emotional development, as
                                                                                                     he had trouble communicating.
                                                                                                          Upon settling in Dover,
                                                                                                     Janet made contact with Jan
                                                                                                     Nisbet through encouragement
                                                                                                     at the Area Agency, and his         Joseph Krumm’s Life Building Team, Hugh Philbrick and Deirdre
                                                                                                     family support team. Jan Nis-       Watson.
                                                                                                     bet had newly arrived in New
                                                                                                     Hampshire and started the In-
                                                                                                     stitute on Disability. Jan was
                                                                                                     a tremendous influence upon
                                                                                                     Janet, and firmly imbedded the
                                                                                                     idea of “Inclusion” into Joe’s
                                                                                                     future. Because of this chance
                                                                                                     encounter, brought on by Family
                                                                                                     Support, The New Hampshire
                                                                                                     Challenge would be born. But
                                                                                                     that is another story…
                                                                                                          With the help, support, vi-
                                                                                                     sion and forward thinking of
                                                                                                     both Jan Nisbet and Donald
                                                                                                     Shumway of the then New
                                                                                                     Hampshire Developmental Ser-
                                                                                                     vices, Janet developed an idea.     Joe self identified his earliest need, the ability to communicate
                                                                                                     Janet thought she could cen-        rapidly. Here, Joe demonstrates his frustration at not being
                            Joseph, shortly after his release from Grand Forks Hospital.             tralize the kind of research and    understood.
                                                                 The New Hampshire Challenge — Winter 2011                                                                  9




Janet Krumm holding the first edition of The
New Hampshire Challenge. The first edition
went out to two hundred and fifty families.          Joe Krumm, about the time he won the right to
Today, the newspaper prints 10,000 per quarter.      attend a regular pre-school.




                                                                                                                                                                                      Cyan Magenta Yellow Black
                                                                                                           Joe Krumm with one of his favorite Aunts, Barbara Oleksik from
                                                                                                           Westminster, MD.




Joe was the first child included into the regular classroom of
elementary school in Dover.

In 1987, these organizations        ganizations all played a part in
worked together. Today funding      both defending Joe’s interests,
streams and poor judgment can       and helping to define his future.                                                                                                                        9
sometimes pit these former allies        On the home front, Joe
against each other to the delight   increasingly treasured his fam-
of our adversaries in Concord.      ily. Extended family visits to
Back then, when Joe’s family        Pennsylvania and Maryland
felt “on the ropes” because of      became important parts of his
bureaucratic issues, these or-      life that we shared. To this day,




                                                                        Joe Krumm attending Saint Joe’s in Dover, with his family.

                                                                        nothing matters more to Joe than   the mixture of “Inclusion” and              Janet and I continued our
                                                                        his extended family and friends.   “Segregated Classrooms” he             relationship with Jan Nisbet and
                                                                             In Middle School and High     wanted and would thrive in.            the Institute on Disability. We
                                                                        School, Joe’s developing needs          In High School, Joe con-          started to hear a good mantra
                                                                        were best met by having him        tinued progress in skills learned      there…“What is your vision of
                                                                        take a “Vocational” track while    through the vocational programs        Joe’s life the day after his 21st
                                                                        continuing to have some regu-      he attended fully integrated in        birthday?” Because of this chal-
                                                                        lar classroom attendance aug-      some regular vocational classes,       lenging vision, we again engaged
                                                                        mented by special education        and his special education segre-       Family Support and Hugh Phil-
                                                                        classrooms which were not          gated class room classes. Joe also     brick. Jointly, we came to the
                                                                        totally integrated. However, Joe   fully participated in regular extra-   conclusion that the day before
Joe at his 20th birthday party, with his Mom and Julie Riley—           was part of the decision mak-      curricular activities such as track
another long term friend which developed from Family Support.           ing process and helped define      and field, dances and his Prom.                 Continued on page 10
            10                                                     The New Hampshire Challenge — Winter 2011



                                                                           Crafted Life
                                                                           Continued from page 9

                                                                           Joe’s services ended, should look
                                                                           no different than the day after.
                                                                           Joe’s family was among the first
                                                                           to develop a three year IEP in
                                                                           order to assure a seamless transi-
                                                                           tion to a quality life for Joe after
                                                                           his 21st birthday when he lost
                                                                           legal protections. At age 21 plus
                                                                           one day, the fact of life would
                                                                           be that Joe would be on his own.
                                                                                Our strategy worked! Joe
                                                                           again was the first DD student
        Joe learning the basics of dog grooming at Dover’s Vocational      in the Dover School System
        Program.                                                           to receive a 3 year IEP which
                                                                           would count time in classroom,
                                                                           and slowly transition that time        Joe Krumm slowly moved from classroom settings to work in
                                                                           down to productive time in the         the community. Here, Joe is helping to clean the HUB (Healthy
                                                                           community. Again, the Family           Universal Beginnings) Child Care Facility in Dover, NH while on
                                                                           Support teams from (now) Com-          High School time.

                                                                                                                                                   munity Partners were on hand
10                                                                                                                                                 lending technical assistance to
                                                                                                                                                   Joe’s family.
                                                                                                                                                        By the time Joe was into
                                                                                                                                                   his 3rd year of the IEP, the vast
Black




                                                                                                                                                   majority of his time was work-
                                                                                                                                                   ing in the community. Joe had
                                                                                                                                                   learned a job and was hired by
                                                                                                                                                   Dover’s own HUB program. Joe
                                                                                                                                                   continued with his vocational
                                                                                                                                                   track until his eventual gradu-
                                                                                                                                                   ation from Dover High School.
                                                                                                                                                        Joe worked well at the HUB
                                                                                                                                                   in Dover, NH until a change
                                                                                                                                                   in leadership there. After new
                                                                                                                                                   leadership took over, Joe was re-
                                                                                                                                                   luctant to go to work. This was a
                                                                                                                                                   grave change in his work attitude,
                                                                                                                                                   and after some investigation it
                                                                                                                                                   became clear that some person-
                                                                                                                                                   nel simply were not tolerant of
                                                                                                                                                   Joe’s needs. Rather than force the
                                                                                                                                                   issue, Janet and I both decided
        Joe awaiting his chance to Hurl the Shot Put for Dover High. One                                                                           to have Joe hand in his resigna-
        of Joe’s proudest moments was when he actually won points for                                                                              tion—which he did eagerly. Joe
        his Dover Track and Field team in competition.                                                                                             learned another lesson, if work
                                                                           Joe attended his Prom with his sister and friends and fully             does not treat you well, or suit
                                                                           participated in the evening.
                                                                                                                                                   you, you can seek another job.
                                                                                                                                                        Re-enter Family Support.
                                                                                                                                                   Part of the reason we decided
                                                                                                                                                   against our usual tactic of con-
                                                                                                                                                   frontation to intolerance, was
                                                                                                                                                   the fact that illness had struck at
                                                                                                                                                   Janet. Somehow, Janet had con-
                                                                                                                                                   tracted a very rare and deadly
                                                                                                                                                   form of cancer. The Family
                                                                                                                                                   Support team at Community
                                                                                                                                                   Partners quickly took up action
                                                                                                                                                   again, and found Joe a very
                                                                                                                                                   similar job to the one he held
                                                                                                                                                   in Dover’s HUB. This time,
                                                                                                                                                   Joe would be working for a
                                                                           Joe Krumm receives the affection and pride of his family and
        Joe Krumm on his way to help his parents craft a 3 year IEP.       Mom at his graduation ceremony.                                                   Continued on page 10
                                                             The New Hampshire Challenge — Winter 2011                                                         11


              Area Agencies                                                      for Developmental Services
Region 1 — North Country                   Director of Family Support:               Region 6 — Nashua                        Intake Coordinator
                                           Karen Welford, 524-1741                                                            Eliza Hobson, ext. 115
Northern Human Services                      karenw@lrcsc.org                        Gateways Community Services
www.northernhs.org                                                                   www.gatewayscs.org
87 Washington Street                       Director of the Family Resource Center    144 Canal St
Conway, NH 03818                             of Central NH:                          Nashua, NH 03064
                                                                                                                              Region 9 — Strafford County
(603) 447-3347                             Karen Welford, 524-1741                   (603) 882-6333                           Community Partners
                                             karenw@lrcsc.org                                                                 www.communitypartnersnh.org
Chief Executive Officer:                                                             President/CEO:                           Forum Court
Dennis MacKay, MSW                         Family Centered Early Supports and        Sandra Pelletier, 882-6333               113 Crosby Road
dmackay@northernhs.org                       Services:                                                                        Dover, NH 03820
                                                                                     Family Support Council Chair:
                                           Jennifer Doris, 524-1741                                                           (603) 516-9300
Family Support Council Chair:                                                        Eric Shaffer, 881-7120
Willie Cintron, 449-2949                   Family-to-Family Coordinator:               the4shaffers@gmail.com                 Executive Director:
akw91@ncia.net                             Lisa DiMartino, 524-1741 ext. 17                                                   Brian Collins, 516-9300
                                                                                     Family Support Coordinator:
Family Support Coordinators:               Benefits Technician:                      Nzenalu Obinelo, 459-2749                  bcollins@communitypartnersnh.org
Stacey Bilodeau, 752-1005, 636-2555,       Lisa Richardson, 524-8811 ext. 136,         nobinelo@gatewayscs.org                Family Advisory Council Chair:
  723-8054 (Coos)                            524-1741 ext. 17, lisad@lrcs.org                                                 Karen Salter, 692-2088
  sbilodeau@northernhs.org                                                           Family Centered Early Supports and
                                           Respite Coordinator:                        Services:                              Family Centered Early Supports and
Shannon Smith, 837-9547 (Upper Grafton)
  ssmith@northernhs.org                    Karen Welford, 524-1741                   Intake Coordinator, 882-6333               Services:
Karen Nelson, 356-6921 (Carroll County)     karenw@lrcsc.org                         Respite Care Coordinator:                Suzanne Iverson, 516-9300
  knelson@northernhs.org)                                                            Carole Poulin, 459-2705                  Director of Family Support:
                                           Legislative Liaison:
                                                                                       cpoulin@gatewayscs.org                 Deirdre Watson, 516-9300
Family Centered Early Supports and         Lisa DiMartino, 524-1741 ext. 17                                                                                           11
  Services:                                                                                                                     dwatson@communitypartnersnh.org
Rochelle Hickmott-Mulkern, 662-2233                                                                                           Parent to Parent:
  rmulkern@northernhs.org
                                           Region 4 — Capitol District               Region 7 — Manchester                    Betsy Carroll, 516-9300
                                                                                     Moore Center Services, Inc .             Benefits Technician:
                                           Community Bridges
                                                                                     195 McGregor St, unit 400                Juanita Elliott, 516-9200
Region 2 — Lower Grafton and




                                                                                                                                                                      Black
                                           www.communitybridges.org                  Manchester, New Hampshire 03l02
                                           2 Whitney Road                                                                     Legislative Liaison:
           Sullivan County                 Concord, NH 03301
                                                                                     Paul Boynton, CEO
                                                                                                                              Hugh Philbrick, 516-9300
                                                                                       paul.boynton@moorecenter.org
Pathways of the River Valley               (603) 225-4153                            (603)668-5423                            Respite Coordinator:
www.pathwaysnh.org                                                                   www.moorecenter.org
                                           Executive Director:                                                                Jena Brown, 516-9300
Administrative Office:
                                           Roy Gerstenburger, 225-4153               Director of Family Support :
654 Main Street
Claremont, NH 03743                         rgerstenburger@communitybridges.org      Ilene Wheeler, 206-2752
542-8706 or 448-2077                       Family Support Council Chair:                ilene.wheeler@moorecenter.org         Region 10 — Atkinson/Salem
Executive Director:                        Annette Kowalczyk, 224-1524               Director of Early Supports & Services:   Region 10 Community Support
Mark Mills, 504-1517                         akowalczyk@comcast.net                  Paula Roberts 206-2782                     Services, Inc .
  mmills@pathwaysnh.org                                                                Paula.roberts@moorecenter.org          www.region10nh.org
                                           Director of Family Support::                                                       8 Commerce Drive
Allyn Girard                               Jo Edwards, 225-4153                      Family Centered Early Supports and
  lgirard@pathwaysnh.org                                                                                                      Atkinson, NH 03811
                                             jedwards@communitybridgesnh.org           Services:
Family Support Council Chair:                                                        Elizabeth Warner (Intake Coordinator),   Executive Director:
                                           Family Centered Early Supports and          206-2732,                              Jane Dichard, 893-1299
Jack McClay, 863-3043
                                             Services:                                 elizabeth.wamer@moorecenter.org
Family Support Coordinator:                225-4153                                                                           Family Support Council Chair:
Cory Shompe, 443-4107                                                                Respite Coordinator:                     Robin Knight, 893-1299
                                           Respite Coordinator:                      Vicki Pepper 206-2879
  cshomphe@pathwaysnh.org                                                                                                     Director of Adult Community Services:
                                           Jo Edwards, 225-4153                        Vicki.pepper@moorecenter.org
Family Centered Early Supports and                                                                                            Gina Consentino, 893-1299
                                             jedwards@communitybridgesnh.org
  Services:                                                                          Family Support Council Chair:            Family Support Services Director and
Kathy Marshall, 433-4132 (Lower Grafton)                                             Pam McDonald 471-0552                      Family Support Coordinator:
  kmarshall@pathwaysnh.org                                                             pmacdonald0@comcast.net
Kathie Sarles, 504-1540 (Sullivan)
                                           Region 5 — Monadnock Region                                                        Kelly Judson, 893-1299

  ksarles@pathwaysnh.org                                                                                                      Respite Coordinator:
                                           Monadnock Developmental Services
                                                                                                                              Anita Trudel, 893-1299
Respite Coordinator:                       www.mds-nh.com                            Region 8 — Seacoast
Kristin Walker, 504-1538                   121 Railroad Street                                                                Family Centered Early Supports and
                                                                                     One Sky Community Services
  kwalker@pathwaysnh.org                   Keene, NH 03431                                                                      Services:
                                                                                     www.oneskyservices.org                   Tammy Dudal (Intake Coordinator),
                                           (603) 352-1304                            755 Banfield Road Suite #3                 893-1299
                                           Executive Director:                       Portsmouth, NH 03801
Region 3 — Lakes Region                    Alan Greene, 352-1304, alan@mds-nh.org    (603) 436-6111                           Benefits Coordinator:
                                                                                                                              Deanna Johnson, 893-1299.
Lakes Region Community Services            Family Support Council Chair:             Executive Director:
www.lrcs.org                               Dick Cornelius, 357-4905                  Bob James, ext. 103
67 Communications Drive
Laconia, NH 03246
                                             dick.c@myfairpoint.net                  Director of Service Coordination:           Moved? Are you
                                           Family Support Coordinator:               Karen McLaughlin, ext. 135
(603) 524-8811
                                           Lynn Yeiter, 352-1304, lynny@mds-nh.org   Family Support Coordinator:
                                                                                                                                 getting duplicate
Executive Director:
Christine Santaniello, 524-8811            Benefits Technician:                      Lenore Sciuto, ext. 107                          copies?
 chriss@lrcs.org                           Lois Hopkins, 352-1304, lois@mds-nh.org   Respite Coordinator:                            Please email Sue Morrison
                                                                                     Tony Herrera, ext. 142                        with your new information at
Family Support Council Chair:              Coordinator:
Susan Michaelis Gunther, 293-7371          Carol Brown, 352-1304                     Director of Community Services             smorrison@communitypartnersnh.org
  smgunther@metrocast.net                    carolb@mds-nh.org                       Leslie Hanson, ext. 143
            12                                                        The New Hampshire Challenge — Winter 2011




                                           Where to Find Help                                                             Statewide Resources
                                           Bureau of Special Medical         26 South Main Street               info@gsgs .org                     nhddcncl@aol .com
                                           Services                          PMB #290                           www .gsgs .org                     www .nhddc .org
                                           271-4488                          Concord, NH 03301                  Provides legal guardianship        Monitors services; promotes
                                           1-800-852-3345 x4488              603-228-2040                       services to people with            policy; advocacy
                                           Division of Public Health;        info@eeinnh .accountsupport .      developmental disabilities and
                                                                                                                                                   NH Family Voices, a
                                           broad range of health programs    com                                mental illness.
        AMI-NH — Alliance for the                                                                                                                  Family to Family Health
                                           for diagnosis and treatment       www .eeinnh .org
        Mentally Ill of NH                                                                                      Granite State Independent          Information and Resource
                                           of children (0-20) who have       Information/referral; early
        15 Green Street                                                                                         Living (GSIL)                      Project
                                           physical disabilities, chronic    intervention and pre-school
        Concord, NH 03301                                                                                       603-228-9680 (V, TTY)              271-4525
                                           illnesses or developmental        programs for children with
        603-225-5359                                                                                            1-800-826-3700(V/TTY               1 (800) 852-3345 x4525
                                           delays                            developmental disabilities or at
        1-800-242-NAMI                                                                                          website: www .gsil .org            nhfv@yahoo .com
                                                                             risk for developmental delay.
        info@naminh .org                   Bureau of Vocational                                                 Information and referral, peer     www .nhfv .org
        www .naminh .org                   Rehabilitation                    Family Resource Connection         support and counseling, skills     Assists families in finding
        Statewide organization and         271-3471 or 1-800-299-1647        271-6826 or 1-800-298-4321         training, advocacy, interpreter    their way through the maze
        affiliates offer information and   Fax: 271-7095                     frc@library .state .nh .us         and personal care attendant        of services by providing
        support to people with serious     www .ed .state .nh .us            www .state .nh .us/nhsl/frc/       services, transportation, social   information and emotional
        mental illnesses and their         Provides individualized           Free,statewide program of          and recreational programs and      support, identifying
        parents, children, spouses,        guidance, counseling and          NH StateLibrary providing          accessibility services.            resources available within
        siblings and friends.              placement services to eligible    materials on all aspects                                              the community, and making
                                                                                                                Institute on Disability/UCED
                                           consumers; also provides          of raising, caring for and                                            available a lending library of
        ATECH Services                                                                                          (Concord office)
                                           family services around needs      educating children, especially                                        books, videos and audio tapes;
        57 Regional Drive, Suite 7                                                                              Phone: 603-228-2084
                                           of individual                     children with special needs;                                          distributes free newsletter,
12      Concord, NH 03301                                                                                       Fax: 603-228-3270
                                                                             free lending library of books                                         Pass It On
        1-800-932-5837                     Child Development Center                                             (Durham office)
                                                                             and videos mailed to your home
        603-226-2900                       653-6060                                                             Phone: 603-862-4320                Northeast Passage
                                                                             with postage paid envelopes
        Fax: 603-226-2907                  Assessment, diagnosis, follow-                                       Fax: 603-862-0555                  UNH/Recreation
                                                                             for return; free research and
                                           up; information and education                                        www .iod .unh .edu                 862-0070
Black




        www .atechservices .org                                              reference service.
        ATECH is an umbrella                                                                                    Training, technical assistance     northeastpassage@unh .edu
                                           Council for Children and
        organization under which                                             Family Support Coordinator,        and resources with the goal        www .nepassage .org
                                           Adolescents with Chronic
        the following organizations                                          DDS                                of improving the quality of        Provides (for a fee) equipment
                                           Health Conditions and their
        function:                                                            (Kris Bregler)                     life and level of participation    and expertise to individuals,
                                           Families
                                                                             271-5057                           of people with disabilities in     schools and companies to
         • NH-ATEC                         105 Pleasant Street
                                                                             1-800-852-3345 x5057               schools, the community and         ensure access to educational
                                           Concord, NH 03301
         • NH Instructional Materials                                        kbregler@dhhs .state .nh .us       the workplace                      outings and recreational
                                           Denise Brewitt
           and Resource Center                                               Can direct you to services                                            activities.
                                           225-6400                                                             Medical Genetics
                                                                             available through the Division
         • ATECH Vision and                1-800-852-3345 x4991                                                 Dartmouth-Hitchcock                Office of Public Guardian
                                                                             of Developmental Services
           Hearing Services                Fax: 271-5166                                                        Medical Center                     603-224-8041
                                                                             (DDS), the 12 Regional Area
                                           ccachc@conversent .net                                               603-653-6044                       Provides legal guardianship
         • Technology Exploration                                            Agencies and Regional Family
                                           www .ccachc .org                                                     Genetic testing and counseling,    services for people with
           Center                                                            Support Programs
                                           Information and advocacy                                             information and referral           developmental disabilities and
                                           Department of Education           Governor’s Commission on                                              mental illnesses .
         • REM-Refurbished                                                                                      M .I .C .E . (Multi-sensory
                                           Bureau of Special Education       Disability
           Equipment Marketplace                                                                                Intervention through               Parent Information Center
                                           101 Pleasant Street               57 Regional Drive
                                                                                                                Consultation and Education)        603-224-7005 V/TTY
        Autism Society of NH               Concord, NH 03301                 Concord, NH 03301
                                                                                                                603-228-1028(V)                    1-800-947-2005
        P .O . Box 68                      603-271-3494                      271-2773 (Voice),
                                                                                                                603-228-5755 (TTY)                 picinfo@
        Concord, NH 03302                  Fax: 271-1953                     271-2774 (TTY)
                                                                                                                Statewide program for              parentinformationcenter .org
        603-679-2424                       www .ed .state .nh .us            1-800-852-3405 (Voice)
                                                                                                                educational and developmental      www .
        info@cnhautism .com                Responsible for ensuring that     Fax: 271-2837
                                                                                                                services for children with         parentinformationcenter .org
        www .geocities .com/SV2833         school districts provide a free   www .state .nh .us/disability
                                                                                                                visual or hearing impairments      Information, support and
        Statewide organization             and appropriate education to      Information and referral.
                                                                                                                and their families.                training around educational
        provides information,              all educationally handicapped     Provides information about
                                                                                                                                                   issues nd advocacy
        advocacy and support to            students                          the many services, laws,           NH Association for the Blind
        individuals with Autism and                                          and regulations that affect        603-224-4039                       Parent to Parent of NH
                                           Disabilities Rights Center,
        Pervasive Developmental                                              citizens with disabilities.        (800) 464-3075                     1-800-698-5465
                                           Inc .
        Disorders (PDD), and their                                           Implementa nd operates             services@sightcenter .com          www .p2pnh .org
                                           18 Low Ave .
        families.                                                            the federally funded Client        www .nhbvi .com                    p2p@nhsupport .net
                                           Concord, NH 03302
                                                                             Assistant Program designed to      Provides information and gives     Specializes in networking
        Brain Injury Association of        603-228-0432
                                                                             work out problems that may         direct services to visually        parents of children with special
        New Hampshire                      1-800-834-1721
                                                                             arise between persons with         imparied people of all ages to     needs; support and information
        109 N . State Street, Suite 2      Fax: 225-2077
                                                                             disabilities and the Division of   enable them to maintain their
        Concord, NH 03301                  drc@totalnetnh .net                                                                                     People First of NH
                                                                             Vocational Rehabilitation          independence.
        225-8400 or 1-800-773-8400         Provides legal services and                                                                             603-568-2128
        mail@bianh .org                    other advocacy assistance         Granite State Guardianship         N .H . Developmental               1 (800) 556-2128
        www .bianh .org                    to persons with disabilities;     Services                           Disabilities Council               janet@peoplefirstofnh
        Statewide organization             information/referral              34 Jefferson Road                  10 Ferry Street                    www.peoplefirstofNH.org
        provides resource information                                        Whitefield, NH 03598-1221          Concord, NH 03301                  Self-advocacy group of people
                                           Early Education and
        to survivors of brain injury and                                     Phone: 603-837-9561                271-3236                           “working together to help each
                                           Intervention Network
        their families.                                                      Fax: 603-837-2613                  1-800-852-3345, x3236              other take charge ofour lives”;
                                                              The New Hampshire Challenge — Winter 2011                                                            13

help team available for new

                                                                          Partners in Health
or existing groups; 24-hour
answering service
Seacoast Child Development
Clinic at UNH                           New Hampshire Partners in Health (PIH) is a comprehensive community-based program designed to address the needs of
603-862-0561 (Voice/TDD)            children with chronic health conditions and their families. The program is currently available in 13 regions of the state through
603-862-0034 (fax)                  the efforts of Council for Children and Adolescents with Chronic Health Conditions and the Department of Health and Human
www .seacoastclinic .unh .edu       Services.
An interdisciplinary clinical
consultation service, assisting         PIH offers families the services of a Family Support Coordinator, respite funds, a resource library and the opportunity to
families of children with           participate in community health care planning. Families can also receive help accessing resources, and solving problems with
developmental disabilities          insurance, finances, and education. As of FY ending June 20, 2001, PIH served 500 families, made 2,900 child contacts, 1,140
by using a team approach.           of which were contacts with children on Medicaid. .
Evaluation may include home
and/or school visit, depending
on needs of child and family.
                                                                        Partners in Health Locations
The program is affiliated with
Dartmouth Center for Genetics       REGION 1                          REGION 5                         REGION 9                        REGION 12
and Child Development and           Berlin, NH                        Monadnock Developmental          Behavioral Health and           Upper Valley Support Group
the Institute on Disability,        Family Resources Center           Services                         Developmental Services of       12 Flynn St.
UNH.                                123 Main Street                   121 Railroad St.                 Strafford County                Lebanon, NH 03766
                                    Gorham, NH 03581                  Keene, NH 03431                  Forum Court,                    603-448-6311
Special Olympics NH                 603-466-9027 or                   603-352-1304                     113 Crosby Road, Suite 1
603-624-1250                                                                                                                           REGION 13
                                    1-800-640-6486, x 406                                              Dover, NH 03820
                                                                      REGION 6                                                         Ammonoosuc Community
1-800-639-2608                                                                                         603-749-4015
Fax: 624-4911
                                    REGION 2                          Gateways Community Services                                      Health Services                  13
                                    Developmental Services            144 Canal Street                 REGION 10                       25 Mt. Eustis Road
www .sonh .org
                                    of Sullivan County                Nashua, NH 03064                 Gateways Community Services     Littleton, NH 03561
Provides sports opportunities       654 Main Street                   603-459-2744                     144 Canal Street                603-444-5962
for athletes with                   Claremont, NH 03743                                                Nashua, NH 03064
developmental disabilities.                                           REGION 7                                                         Additional information
                                    603-542-8706                                                       603-459-2763
                                                                      VNA Home Health & Hospice                                        about PIH can be found on




                                                                                                                                                                        Black
“Talking Books”                     REGION 3                          Services, Inc.                   REGION 11                       the CCACHC website:
(NH Bureau of Services to           Community Health & Hospice        1850 Elm St.                     Center of Hope, Inc.            www.ccachc.org
Persons with Disabilities)          780 N. Main St.                   Manchester, NH 03104             626 Eastman Road
271-3429 or 1-800-491-4200          Laconia, NH 03246                 603-622-3781                     Center Conway, NH 03813
www .nh .gov/nhsl/                  603-524-8444                                                       603-356-6921
talking_books                                                         REGION 8
                                    REGION 4                          Families First of the Greater
FREE service for people with
                                    Community Bridges                 Seacoast
visual, physical, and reading
                                    525 Clinton St.                   100 Campus Drive, Ste 12
disabilities. Supplies (by mail)
                                    Bow, NH 03304                     Portsmouth, NH 03801
cassette books and records          603-226-3212                      603-422-8202 ext. 146
and equipment needed to use
them. Fiction, non-fiction and
popular magazines available
VSA arts of New Hampshire
228-4330                               NH Community Mental Health Centers
info@vsaartsnh .org
www .vsarts .org                    Region I                                      Plymouth: 536-1118                         Main Office: 668-4111
Provides opportunities in the       Northern NH Mental Health and                 Region IV                                  Region VIII
arts for people with disabilities   Developmental Services                        Riverbend Community Mental                 Seacoast Mental Health Center
and technical assistance for        Main Office: 447-3347                         Health Center                              Main Office: 431-6703
programmatic and cultural           Conway: 447-2111                              Main Office: 228-1551                      Exeter: 772-2710
access                              Berlin: 752-7404                              Franklin: 934-3400
                                    Groveton: 636-6193                                                                       Region IX
                                    Wolfeboro: 569-1885
                                                                                  Region V                                   Community Partners
                                    Colebrook: 636-6193                                                                      Dover: 742-0630
                                                                                  Monadnock Family Services
     Help The                       Littleton: 444-5358
                                                                                  Main Office: 357-4400
     Challenge                                                                    Peterborough: 924-7236                     Region X
                                    Region II                                     Jaffrey: 532-4291                          Center for Life Management
                                    West Central Community Mental                 Winchester: 239-4376
   work another                     Health Services
                                                                                                                             Main Office (Derry): 434-1577
                                                                                                                             Salem: 893-3548
                                    Main Office: 448-0126
    25 years by                     Claremont: 542-2578, also 542-5449
                                                                                  Region VI                                  Windham: 434-9937
                                                                                  Greater Nashua Mental Health
     using the                      Lebanon: 448-1101
                                                                                  Center at Community Council
                                    Newport: 863-1951
                                                                                  Main Office: 889-6147
     enclosed
                                    Region III                                    Region VII
     donation                       Genesis Behavioral Health
                                                                                  Mental Health Center of Greater
                                    MainOffice: 524-1100
     envelope.                                                                    Manchester
            14                                                      The New Hampshire Challenge — Winter 2011




                  Additional Resources
        Helpful Websites:         Publications of Interest
        www .aapd .com                                     www .dhhs .state .nh .us                                Disability Solutions
        American Association of People with                NH Department of Health and Human Services              FREE
        Disabilities                                       web site. Information on benefits programs.             A resource for families and others interested in Down
        www .ablenh .org                                   www .hhs .gov/newfreedom/                               syndrome and related disabilities.
        Advocates Building Lasting Equality in             US Department of Health and Human Services’             Published six times a year.
        New Hampshire (ABLE NH) is a new                   New Freedom Initiative                                  For information on subscriptions, call (503) 244-7662
        grassroots advocacy organization for families                                                              www.disabilitysolutions.org
                                                           www .inclusionresearch .org
        & professionals concerned with achieving
                                                           Inclusion Research Institute—a nonprofit                subscription@disabilitysolutions.org
        inclusive natural supports for children and
                                                           organization whose activities include education,
        adults with disabilities in New Hampshire.                                                                 Exceptional Parent Magazine
                                                           research and dissemination of information
        ABLE NH is committed to achieving a stable                                                                 Paid subscription, $39.95 a year
                                                           promoting inclusion
        sustainable inclusive presence for all in their
                                                                                                                   Feature articles; extensive listing of national organizations
        own communities. The group was led by, and         www .nhhelpline .org
        included, the premier organizations surrounding    New Hampshire Help Line                                 for specific disabilities/conditions
        disabilities in NH, including: the Institute on                                                            (201) 489-4111, 1-877-372-7368, www.EParent.com
                                                           www .nhspinal .org
        Disability at UNH, Disabilities Rights Center,
        NH Council on Developmental Disabilities,
                                                           NH Chapter of the National Spinal Cord Injury           New Developments
                                                           Association                                             Benefit of membership
        Parent Information Center, NH Family Voices,
14      NH Area Agencies, Direct Support Providers,        www .nichcy .org                                        (cost of 1 year membership - $50 for families;
        People First, and most importantly parents and     National Information Center for Children and            $90 for professionals)
        self advocates. See their organization meeting     Youth with Disabilities                                 Published quarterly by Developmental Delay Resources,
        under Upcoming Events.                             www .nod .org                                           a nonprofit organization that connects parents and
Black




        www .access-able .com/                             National Organization on Disability                     professionals, disseminating to them the most current
        Access-Able Travel Resource                                                                                information about causes, interventions, and preventions
                                                           www .sath .org
                                                           Society for Accessible Travel & Hospitality             for developmental delays by seeking healthy options for
        www .ada .gov
        American Disability Association                                                                            the whole child.
                                                           www .silcnh .org
                                                                                                                   (301) 652-2263, devdelay@mindspring.com
        www .albinism .org                                 Information and Resource Newsletter New
                                                                                                                   www.devdelay.org
        The National Organization for Albinism and         Hampshire Statewide Independent Living
        Hypopigmentation                                   Council (SILC) is updated monthly with a host           Family Voices
                                                           of resources from A to V under resources that
        http://aspe .os .dhhs .gov                                                                                 FREE
                                                           can be sent by email, just hit subscribe or send
        Hundreds of publications on disability-related                                                             Resources and information for families with special health
                                                           to: NH Statewide Independent Living Council
        subjects available on-line                         c/o Governor’s Commission on Disability                 care needs; quarterly
        www.benefitscheckup.org                                                                                    800-852-3345 x 4525, nhfv@yahoo.com, www.nhfv.org
                                                           www .skimhs .org
        A nonprofit initiative led by the National         Maine Handicapped Skiing—offers year-round              Ragged Edge
        Council on Aging which features a database of      recreation for people with physical disabilities
        roughly 1,000 federal and state programs for the                                                           FREE
                                                           free of charge                                          Magazine written by and for people with disabilities with
        elderly and people with disabilities.
                                                           www .socialsecurity .gov                                information on issues pertinent to the disability movement;
        www .csni .org                                     Information on Supplemental Security Income             bi-monthly
        Community Support Network, Inc.                    (SSI), disability and related benefits                  Fax: (502) 899-9562
        www .dot .gov/accessibility                        www .yourtickettowork .com                              circulation@raggededgemagazine.com
        The US Department of Transportation’s site         Information on the Social Security Ticket to            www.raggededgemagazine.com
        for information about air travel for people with   Work program
        disabilities
        www .dredf .org
        Disability Rights Education and Defense Fund,
        founded in 1979 by people with disabilities
        and parents of children with disabilities, is a
                                                              Tax Credits & Deductions for
        national law and policy center
        www .emerginghorizons .com
                                                              Children & Adults with Disabilities
        Consumer oriented magazine about accessible           By Jan Larsen, Executive Director, The New Hampshire Challenge




                                                              F
        travel. Available in print and on-line.
                                                                     amilies who share a home with a person with              At www.irs.org there are publications that explain
        www .eseals .org                                             disabilities can claim their relative as a depen-   the tax deductions for parents & other relatives of chil-
        Easter Seals NH                                              dant if the individual is permanently disabled.     dren & adults with disabilities.
        www .cms .hhs .gov                                    This applies to siblings & other relatives beyond this          In many towns in New Hampshire there are prop-
        Information from the US. Centers on Medicare          individual’s parents & also covers adults as well as       erty tax deductions if a family has a member with a
        and Medicaid (formerly the U.S. Health Care           children.                                                  disability. Call your town hall for more information. n
        Financing Administration)
                                                       The New Hampshire Challenge — Winter 2011                                                      15




                                    UPCOMING EVENTS
 Event                                                                               Location      Date                        Topics
 Supporting Friendships!                                                             Concord       March 23, 2011              Community Living
 Webinar: Developing Measurable Post-Secondary Goals and                                                                       Inclusive Education
                                                                                                   March 24, 2011
 Age-Appropriate Transition Assessments                                                                                        Community Living
 Career Planning and Job Search Methods                                              Concord       March 24, 2011              Community Living
 Picture This!                                                                       Concord       March 25, 2011              Community Living
 “All Together Now” NAMI NH’s Annual Conference at the Grappone
                                                                                     Concord       March 26, 2011
 Conference Center
 Research to Practice Series: Special Education Finance: The Costs and                                                         Inclusive Education
                                                                                     Concord       March 31, 2011
 Benefits of Inclusive Education                                                                                               Autism
 Emergent Literacy Assessments for Young Children: Using the Individual
                                                                                     Concord       April 05, 2011              Inclusive Education
 Growth Development Indicators (IGDIs)
                                                                                                                               Inclusive Education
 Webinar: Developing Courses of Study and Transition Services                                      April 07, 2011
                                                                                                                               Community Living
 Job Development, Customized Job Proposals, and Customized
                                                                                     Concord       April 07, 2011              Community Living
 Job Support
 Universally Designed Technology to Support Reading, Writing, and                                                              Assistive Technology        15
                                                                                     Concord       April 07, 2011
 Communication in the General Education Classroom                                                                              Inclusive Education
                                                                                                                               Community Living
 Resource Development: Who Needs to Come to the Table?                               Concord       April 13, 2011
                                                                                                                               Inclusive Education
 Person-Centered Planning for Older Adults                                           Concord       April 20, 2011              Community Living




                                                                                                                                                           Black
 Janet Krumm Disability & Media Lecture Series                                       Durham        April 21, 2011
 Twenty-Fifth Annual NH Family Support Conference. Mount Washington
 Resort, Bretton Woods. Registration ends March 18th—to register call                              April 29th to May 1, 2011
 your Area Agency.
 Natural Supports Strategies and Assistive Technology Solutions                                                                Assistive Technology
                                                                                     Concord       May 04, 2011
 in the Workplace                                                                                                              Community Living
                                                                                                                               Inclusive Education
 Research to Practice Series: Wrap-Up and Presentation of Outcomes                   Concord       May 05, 2011
                                                                                                                               Autism
 Going for Guardianship                                                              Portsmouth    May 11, 2011                Community Living
 Person-Centered Planning for Older Adults                                           Concord       May 11, 2011                Community Living
                                                                                                                               Assistive Technology
 There’s an App for That!                                                            Concord       May 13, 2011
                                                                                                                               Community Living
 Going for Guardianship                                                              Manchester    July 14, 2011               Community Living
                                                                                                                               Autism
 13th Annual Autism Summer Institute                                                 Nashua        August 08, 2011
                                                                                                                               Inclusive Education




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Dover, NH 03821-0579                      All gifts to The New Hampshire Challenge are tax-deductible to the fullest extent of the law.
                                16                                                         The New Hampshire Challenge — Winter 2011



                            Crafted Life
                            Continued from page 10

                            retirement community in the
                            Rochester area where he was
                            welcomed, valued, and given the
                            chance to use the equipment he
                            knew he could master.
                                 Joe once again was at work,
                            earning money, paying taxes and
                            could not wait to get out the door
                            to start a work day again.
                                 Much has been written
                            about the extraordinary passing
                            from this life of Janet Krumm,
                            Joe’s mother. We will not return
                            to that story as it has been well                                                                               Joe embracing his Mom, shortly before her loss to cancer during
                            covered. However, Janet’s loss                                                                                  a happy visit of a family friend and her daughter.
                            had a tremendous impact on
                            Joe’s life and again Family Sup-
                            port was engaged and recom-
                            mended targeted therapy for Joe      Joe Krumm, because of Family Support, master of his craft and
                            to face head on, and effectively     happily at work in Rochester, NH.
                            process the loss of his mother.
                                                                 Joe’s Dover home on an early       the house again, and Mary Ellen
16                               The therapy appears to have
                            done well for Joseph. As fate        visit, Joe walked up to her and    is already making her impact
                            would have it, a long lost High      grabbed her elbows. Joe looked     on Joe’s life felt. Mary Ellen
                            School sweetheart of Jack’s          directly into Mary Ellen’s face    insisted that Joe receive speech
Cyan Magenta Yellow Black




                            came back into his life after        and stated the following…“I        therapy this year as she observed
                            Janet died, and after forty years    think…I love my mommy, and         his rapid progress. Joe now can
                            of losing touch.                     I love you.”                       handle four syllable words for
                                 Joe welcomed Mary Ellen              While “floored” at Joe’s      the first time in his life. The first
                            Horan into his life. He looks for-   statement, no one was surprised    four syllable word he mastered
                            ward to being his Father’s best      at his acceptance. Joe is simple   was “Mar/ree/Ell/lin”.
                            man at their upcoming wedding,       and clear to those he loves and         Oh yes, a true resident of the
                            on the 29th of October, 2011 in      accepts. He always was rock        Granite State, Joe often observes
                            Towson, Maryland.                    solid, and Janet’s loving spirit   his pay check and states the
                                 Joe had a striking way to       is well carried by him.            following…“Taxes bad!”
                            announce his acceptance of                Both Joe and Jack look             Joe’s well crafted life con-
                            Mary Ellen. As she came into         forward to having a woman in       tinues to evolve. n                     Jack with Joe’s future step-mother, Mary Ellen Horan.




                                                                                                                                                            Joe has taken to his future step-Mother, Mary
                            Joe always carries extra prayer cards and will        Nobody’s “burden,” Joe Krumm tips his hat to those who visit him          Ellen. They have a great relationship, and Mary
                            share them with you after a promise to “pray for      while he works in one of Rochester’s retirement communities.              Ellen is now helping to define Joe’s service plan
                            my mommy.”                                            Joe is a prized and highly valued worker, not to mention happy.           with Community Partners Family Support Team.

				
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Description: Disability issues from a family perspective.