The Guardianship Project

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                                            ALLIANCE                                                                              Volume 1, Issue 2

    The Guardianship Project                                                                                                 Board of Directors
                 Liberty for All                                                                                              Patricia A. Flood, J.D.
        The Guardianship Project was
                                                                                                                                      Cathy Enfield
   officially awarded to Missouri Protection                                                                                       Vice-Chairperson
   and Advocacy Services June 1, 2008. The
                                                                                                                                      Cynthia Keele
   Guardianship Project will provide services                                                                                    Secretary/Treasurer
   that help people with developmental
                                                                                                                                    Ethel R. Wesson
   disabilities modify their guardianship status
   and increase their independence.                                                                                                  Ethel Campbell
        Missouri People First and the UMKC-                                                                                      Elizabeth C. Moore
   Institute on Human Development (IHD)
                                                                                                                         Sakina S. Drummond, Ph.D.
   are also part of the Project. These three
   agencies are looking for individuals who                                                                                         Michele Ohmes
                                                                  Mr. Edward McNeil
   would like to participate in the Project.                                                                                          Larry Opinsky
        The Guardianship Project is the result     MO P&A Wins Medicaid Battle                                             Katheryne Staeger-Wilson
   of research done by Missouri’s Planning
                                                        Mr. Edward McNeil, a kind and soft-                                           MSW, LCSW
   Council for Developmental Disabilities
   (MPCDD).                                        spoken gentleman, was the unfortunate
                                                   victim of a hit-and-run car accident that                           PAIMI Advisory Council
        “The Project was developed from
   grassroots input when individuals with          fractured his left clavicle, left forearm, and                                   Ethel R. Wesson
   disabilities, family members, and others        severely fractured his left leg.                                                     Chairperson

   identified guardianship as an issue many             McNeil was unemployed and homeless                                        Barbara H. French
   needed help with,” says Delores Sparks, the     at the time of the accident. Following                                          Vice-Chairperson
   MPCDD coordinator.                              surgery to repair his leg, and treatment                                   Patricia A. Flood, J.D.
        Roger Crome, President of Missouri         of his other injuries, he found the care he
                                                   desperately needed at a skilled nursing                                 Rev. Karlous Kalu, MSW
   People First, thinks that MO P&A set up
   a great coalition for the Project. “The         facility, the Carrie Elligson Gietner Home.                                     Sonya Messenger
   partnership on this project is an awesome       There, he began the therapy necessary for a
                                                                                                                                     Ethel Campbell
   opportunity to collaborate on a project that    proper recovery.
   will have real impact on people’s lives,”            Unfortunately, Edward’s therapy was                                     May Holland, MSW

   Crome said.                                     cut short due to his inability to pay. As a                                     Mary Crutchfield
        A Guardianship Resource Guide is                               Medicaid continued on p.3
   currently in development, and the IHD is
   working to connect self-advocates to the
   information they need. Sheli Reynolds,          In This Issue:
   who works in the IHD, says, “the Project
                                                   Restraint and Seclusion at School.......................................................2
   will allow us to disseminate a good deal
   of resource material to people so that they
                                                   The Guardianship Project; Medicaid Battle......................................3
   understand the issues with guardianship.”       Legislative Update..............................................................................4
                                                   Make Your Voice Heard: Vote!............................................................5
                   Guardianship continued on p.3   New Staff; “Thank You, MO P&A!”; Investigator Training.............6
                                                   WIPA Re-certification; PABSS Outreach; Conferences....................7
                                                Restraint and Seclusion at School

                                                                                  Seclusion is often used when teachers believe a student
                                                                             is interfering with the learning of other students. Seclusion
                                                                             differs from a time-out though -- Individualized Education
                                                                             Plans often take such breaks into account. Seclusion refers
                                                                             to the removal of the student from the class activity and
                                                                             is often the result of a teacher wanting the youth with a
                                                                             disability out-of-sight, out-of-mind.
                                                                                  Seclusion is rarely necessary, but it is becoming more
                                                                             apparent that some schools practice involuntary seclusion
                                                                             as rooms used for solitary confinement are being reported.
                                                                                  Missouri Protection and Advocacy, in responding to
                                                                             cases where restraint and seclusion occurs, will often point
                                                                             to the Department of Mental Health’s guidelines.
         All students should be included in the learning process.                 Such disciplinary methods should never be used as
                                                                             punishment. Restraint and seclusion are last-resort methods
     Parents of children with disabilities are often shocked                 and should be treated as such.
when they learn of the ways in which some Missouri                                “I’m afraid that these methods are used more than a
schools discipline their children. There is a growing                        lot of people realize, and they are harmful to the students
awareness among these parents, stemming from the                             who experience them -- not just physically, but mentally
networks they form with other parents at conferences and                     too,” says Byron Koster, a Senior Advocate with Missouri
online. What is it they’re finding out?                                      Protection and Advocacy, who has been receiving reports
     The state of Missouri’s Department of Elementary                        from parents whose children have been subjected to
and Secondary Education (DESE) has a set of guidelines                       inappropriate restraint or unnecessary seclusion.
pertaining to suspension and expulsion that includes                              Call our Application Unit (800-392-8667) if you feel
protection for pupils with disabilities, but DESE has no                     that you or your child’s rights have been violated.
code or “best practices” statement regarding discipline in
the classroom. This lack of regulation enables ill-mannered
administrators to become heavy-handed and violate the
students’ rights.                                                                        Under What Circumstances are
     The methods of discipline that youth with disabilities
are most susceptible to include school officials’ use
                                                                                        Restraint and Seclusion Permitted?
of restraint and seclusion. While not regulated in our
                                                                                 Restraint could be permitted:
state’s classrooms, these methods do have set procedural
guidelines that apply within the Missouri Department of                                 . in emergency situations to ensure the person’s
Mental Health. Use of these methods by teachers is out-of-                               physical safety or protect others from harm
place and frequently inappropriate.
     Approved restraint methods may be warranted when
                                                                                        . when less-restrictive interventions have been
a teacher wants to keep two students from harming one
another, but restraint can easily be abused when an educator                            . as long as necessary to prevent injury
uses it because it is more convenient to restrain the pupil
instead of providing the youth with an outlet or time-out.                       Restraint or Seclusion may not be used:
Educators need to understand their students’ disabilities
                                                                                        . as punishment
so that they can operate a classroom where everyone is
respected.                                                                              . in retaliation
     School officials can be held accountable if they utilize                           . for convenience
restraint because they believe it to be more convenient than
providing the appropriate accommodation.

Page 2                                                              Volume 1, Issue 2                                                     Alliance
Guardianship, from p.1
     “Guardianship is not the only option,” Sheli says,            at the Guardianship Project trainings. MO P&A has made
“this project is about educating and training people about         it one of their goals to modify the guardianship status of at
alternatives to guardianship that are less restrictive.”           least twenty-five (25) individuals.
     She hopes to have the Guardianship Project’s resource              “The Project goes hand-in-hand with our support of
material on a website related to the IHD,, disability rights,” says Staff Attorney Lisa Sutherland, who is
in the near future.                                                organizing the Guardianship Project for MO P&A.
     Training sessions will be another core                                              “With the training and information
component of the Project, and a calendar                                             everyone will be receiving, attorneys,
of scheduled trainings will be available                “this project is             advocates, and consumers will be able to
once training locations are confirmed. The                                           continue their work on guardianship issues
Project will host a number of                         about educating                with a greater expertise,” added Lisa. The
“Re-Determining Guardianship Status”                and training people              Guardianship Project is formally charted
trainings in eleven (11) different locations
around the state. Information regarding
                                                                                                       years, but it will have a
                                                    about alternatives to as lasting two (2) on the agencies involved.
                                                                                     permanent effect
the sessions will be publicized by Missouri        guardianship that are                 Individuals with developmental
People First chapters, Independent Living                                            disabilities who contact MO P&A about
                                                       less restrictive”
Centers, and many other agencies.                                                    guardianshup issues will have their
     You can also stop by the Missouri                    -Sheli Reynolds            guardianship status reviewed, and may
Developmental Disabilities Network booth                                             be provided advocacy support and legal
at statewide conferences for information.                                            representation.
     Missouri Protection and Advocacy Services hopes to                 If you are interested in being a part of the Guardianship
reach over 200 self-advocates, counselors, teachers, service Project, you should call MO P&A’s Application Unit at
providers, and family members of persons with disabilities 800-392-8667.

Medicaid, from p.1
result, his injuries did not heal properly, his pain began to     McNeil and Foster.
increase, and additional surgeries were necessary.                     Edward said of the hearing, “I really didn’t have to be
     The Home continued to provide Edward McNeil                  there the way you (Byron) was (sic) handling things.”
the care and support he needed, but he refused his pain                On March 18,
medication because he did not like accepting medications          2008, the Hearing
he could not afford.                                              Officer rendered a
     Faced with growing medical bills from the ongoing            decision favorable
treatment of his injuries, McNeil applied for, and was            to Mr. McNeil and
ultimately denied, Medicaid assistance. The basis of this         ordered that his
denial was, the “...Claimant is not permanently and totally       medical assistance
disabled ...”.                                                    benefits be backdated
     “I almost gave up,” Edward said. He didn’t realize there     to the date of his
was anyone who could help him. That’s when, with the              original application for
support of Mr. James Foster, his social worker at the facility,   benefits. Additionally,
he contacted Missouri Protection and Advocacy Services.           the Officer ordered
     McNeil’s case was assigned to Senior Advocate,               the exploration of
Byron Koster. Byron obtained and reviewed relevant                reimbursement of any
                                                                                                Senior Advocate Byron Koster
facility records, which included medical care and treatment       expenses paid that could
documentation. On March 5, 2008, the day of the hearing,          have been covered by Medicaid.
Byron met with Mr. McNeil and Mr. Foster to prepare for                Edward exclaimed, “I was flabbergasted. I was happy
presentation of the case to the hearing officer.                  to know everything worked out fine.”
     During the hearing, Byron utilized previously discussed           McNeil will be going back into surgery soon and, as he
strategies, presented evidence, and questioned                    understands it, all expenses should be covered by Medicaid.

Page 3                                                  Volume 1, Issue 2                                                Alliance
                          The Leg islative Update

                  Federal Legislation                                              State Legislation
     The 110th Congress, 2nd Session, is still in progress.          The Missouri Legislative Session ended the day of
Congress is addressing several issues that will affect          May 16, 2008.
individuals with disabilities.                                       Autism was a topic of interest this session. Senate
     On April 8, 2008, Congress passed the Traumatic            Bill 768 established the Missouri Commission on
Brain Injury Act of 2008. Among other provisions, the           Autism Spectrum Disorders. The Commission would be
Act reauthorizes the Protection and Advocacy for clients        responsible for creating a plan for an integrated system to
with Traumatic Brain Injury program. This will allow            address training, services, and treatment for individuals
the protection and advocacy system to continue assisting        with Autism Spectrum Disorders.
individuals with traumatic brain injuries and their families.        The bill further established the Office of Autism
     The Act was signed into law by President Bush on           Services within the Department of Mental Health, Division
April 28, 2008.                                                 of Mental Retardation/Developmental Disabilities. The
     Another bill of interest is                                responsibilities for the Office of Autism Services are also
H.R. 5772. This bill amends                                     provided in the bill.
the laws governing Section                                           The bill was truly agreed to and finally passed on May
811 Housing, supportive                                         8, 2008. The bill was delivered to Governor Matt Blunt for
housing for individuals                                         his signature on May 29, 2008.
with disabilities. The bill                                          Another bill of interest is Senate Bill 1081. This bill
also provides authority for                                     makes several changes to the laws governing quality
appropriations for Section                                      assurance and safety in community programs which
8 assistance for eligible                                       serve individuals with developmental disabilities. The
individuals with disabilities.                                  community programs to which the bill refers are those
     This bill was introduced                                   licensed, certified, or funded by the Department of Mental
on April 10, 2008, by                                           Health.
Representative Christopher                                           The bill requires mental health workers to be listed on
Murphy (D-CT).                                                  the Family Care Safety Registry.
     The Stop Child Abuse in Residential Programs for                The bill also requires staff members of community
Teens Act of 2008 was introduced on April 23, 2008. This        programs to report suspicions of abuse and neglect.
bill establishes standards for private facilities that assist        The bill further subjects all facilities and group homes
teenagers with behavioral, emotional, and mental illness        for individuals with developmental disabilities to all federal
issues. The bill further requires protection and advocacy       and state laws, regulations, and monitoring requirements.
systems to receive information regarding abuse and neglect           Community programs are to meet the same standards as
complaints arising at these facilities.                         state-run facilities under Senate Bill 1081.
     Finally, protection and advocacy systems would be               Senate Bill 1081 was truly agreed to and finally passed
included in the establishment of standards on the state level   on May 16, 2008. On May 29, 2008, the bill was delivered
for these facilities.                                           to the Governor for his approval.
     The above information and other information regarding           The above information and other information regarding
the 110th Congress can be found at;       the 2008 Missouri Legislative Session can be found at; and,                    and

Page 4                                                 Volume 1, Issue 2                                             Alliance
                                          Make Your Voice Heard: Vote!

                                                                 government documents to the need for money to be
                                                                 appropriated to MO HealthNet’s therapy programs. If
                                                                 recognized as a voting bloc, persons with disabilities can
                                                                 affect politician’s decisions regarding these issues.
                                                                     Steps are also being taken to distribute brochures
                                                                 to nursing homes, assisted living centers, libraries, and
                                                                 vocational rehabilitation centers.
                                                                     You can help! Please call 1-800-233-3958 if you know
     Lisa Donelon, Staff Attorney, and Doug Rueff,
                                                                 someone who would be interested in voting from home.
Advocacy Specialist, are working hard to make sure
                                                                 Request a brochure that includes information about how the
persons with disabilities have a major role in the upcoming
                                                                 Permanently Disabled Voting list works, and a form to mail
election. At the recent Missouri Protection and Advocacy
                                                                 to your local election authority.
In-Service, Lisa invited all advocates to take some of MO
                                                                     Need to register to vote? A Missouri voter registration
P&A’s Vote At Home brochures back to their offices so that
                                                                 card can be found online at
they would have copies to give clients who would be more
                                                                     Any questions? Please call Lisa Donelon, Doug Rueff,
likely to vote if on the Permanently Disabled Voting List.
                                                                 or Sandy Barbour at 1-800-233-3958. Or contact the
     Missouri law says that, if you are a person with
                                                                 Missouri Secretary of State’s Office at 1-800-NOW-VOTE.
incapacity or confinement due to illness or physical
disability, you can join the Permanently Disabled Voting
List by notifying your local election authority and asking
to be placed on the Permanently Disabled Voting List. The
Permanently Disabled Voting List is a list maintained at each
county’s election authority. The voter who is disabled will be
able to choose whether to vote at home or at the polls during
each election.
     Many advocates have recently received dozens more
of the Vote At Home brochure. The plan is to have the
brochure distributed to the offices of each county’s election
authority. The election authority can then distribute the
                                                                       How to Make Your Vote Count:
brochures when they are asked for information on voting
                                                                    If you haven’t registered in your county, call
with a disability.
                                                                    1-800-NOW-VOTE or visit and
     Doug Rueff, who previously worked in the Virginia
                                                                    fill out a voter registration card.
State Board of Elections, has been making it a point to
emphasize the importance of the brochure to election
                                                                    If you would like to vote from home, call
authorities. He is working to have MO P&A stop by the
                                                                    MO P&A at 1-800-233-3958 and request a
different election authority’s offices across the state.
                                                                    Notice of Permanent Disability Form.
     “Making an election accessible to people with
disabilities is only one of the complexities election
                                                                    By September 23, 2008, your Notice of Permanent
authorities must deal with to be successful,” says Doug,
                                                                    Disability Form must be completed and received by
“our intent is to be a help to local election officials rather
                                                                    your local election authority.
than a thorn in the side.”
     The MO P&A Vote At Home brochure contains the
                                                                    By October 29, 2008, you must return the Request
answers to many questions that may be posed to election
                                                                    for Absentee Ballot to your local election authority.
     It is essential that the disabled community vote. There        Vote before November 4, 2008, or go to the polls
are many important issues that affect the community, from           to make your voice heard!
the recent push for people first language in Missouri

Page 5                                                 Volume 1, Issue 2                                             Alliance
               New Staff at MO P&A                                                    Investigators Training

                                                                           On May 21-23, 2008, ten members of Missouri
                                                                      Protection and Advocacy Services’ Investigation and
                                                                      Monitoring Unit attended the Missouri State Investigators
                                                                      Association’s annual training conference in Osage Beach,
                                                                           The three-day conference served a wide variety of
                                                                      professionals, mixing MO P&A employees with state law
                                                                      enforcement officers and private investigators. The training
           From left to right: Susan, Doug, Sandy, & Colan            covered a number of topics related to MO P&A’s work in
                                                                      investigating allegations of abuse and neglect of individuals
     Missouri Protection & Advocacy Services has                      with disabilities.
welcomed four new employees since the end of 2007.                         A three-hour session on the first day of the conference
     Susan Bartlett is MO P&A’s most recent team member.              dealt directly with the topic of institutional investigations.
In April, Susan became our new Attorney in St. Louis.                 Presenters told the attendees to think of institutions as
Before working in our St. Louis office, Susan worked for              though they were each a “different world” where new rules
the St. Louis Arc and Places for People.                              and norms have to be taken into account in order to engage
     A month before Susan started her work, Doug Rueff                in successful investigating.
became the Kansas City office’s new Advocacy Specialist.                   Members of Missouri Protection and Advocacy’s group
Doug previously worked as the Accessibility Coordinator               also attended sessions on investigator safety, interviewing,
for the Virginia State Board of Elections. Before working             evidence collection, and report writing.
at MO P&A he was on active duty with the U.S. Army                         Kim Jones, who works as the Investigation and
Reserve.                                                              Monitoring Unit’s Information Specialist at MO P&A,
     In January, MO P&A welcomed back Sandy Luebbert.                 found the report writing session most important. “Our
Sandy previously worked for MO P&A in Jefferson City,                 investigations are only as good as the reports we write,”
and returned to the agency as Springfield’s new Advocacy              Kim said. She added, “every report writing training has the
Specialist.                                                           same motto: ‘if it isn’t in the report, it didn’t happen’.”
     Colan Holmes works as MO P&A’s Public Relations                       Erica Stephens, the head of MO P&A’s Investigation and
Specialist. Colan graduated from the University of                    Monitoring Unit, says that more than just members of the unit
Missouri-Columbia in 2007 and began first professional                benefit from the training. “When our unit does good work,
                                                                      we positively affect the lives of people with disabilities,” said
career with MO P&A right before the New Year.
                                                                      Erica, “that’s the unit’s job, and they do it well.”
                                                                           Missouri Protection and Advocacy Services performed
            “Thank You, MO P&A!”                                      a total of 120 investigations in 2007. The work that
                                                                      MO P&A’s Investigation and Monitoring Unit does for
    Anna D’Agostino, a resident of Columbia, Missouri,                individual clients often has a greater, net impact, as they
recently thanked Advocacy Specialist Elizabeth Skym for               often investigate abuse and neglect in community settings.
her work.                                                             The unit helps protect the rights of thousands of individuals
    “We needed this help and clarification for many, many             with disabilities every year.
years,” wrote Anna, “Elizabeth has gone ABOVE and
BEYOND her duties and certainly our expectations. She is
somehow able to make you feel like you are her only client.
She is truly amazing and a blessing.”
    Anna was a client of the Traumatic Brain Injury
program. She needed help with a social security
overpayment and Elizabeth was able to get Anna the results
she desired. MO P&A hopes to continue the good work in
many more cases in that program.
    We really do appreciate the thanks, Anna!

Page 6                                                       Volume 1, Issue 2                                                Alliance
                WIPA Re-certification                              Reaching Out to Beneficiaries of Social Security
    In April, MO P&A’s current Community Work                           Missouri Protection and Advocacy Services is always
Incentive Coordinators (CWICs) completed a                         looking for new ways to reach out to potential clients.
re-certification process that allows them to continue their        Advocates have been delivering brochures regarding the
work in the Work Incentives Planning and Assistance                PABSS Program to Missouri Career Centers in the Kansas
(WIPA) program. Amanda Minter, Elizabeth Skym, Amy                 City and St. Louis areas. In St. Louis, advocates have also
Newberry, Betty Farley, and Ceil Callahan all studied hard         attended career fairs to talk with persons with disabilities
to pass their exams.                                               who are looking for work. Thus far, 950 brochures have
    Susan Boles will also be working as a CWIC for                 been distributed.
the Kansas City office. She is set to undergo the next                  The PABSS program is designed to assist beneficiaries
certification cycle, ending on August 20, 2008.                    of social security. Social Security benefits can be affected
    The WIPA program helps persons with disabilities               by employment.
manage their income when they enter the workforce by                    Sometimes the social security system can be hard to
balancing Social Security payments with money earned               understand, and mistakes can take a long time to correct.
from work.                                                         The advocates in the PABSS program know how the system
    CWIC’s are here to help people with disabilities find          works and can help clients navigate that system for faster
rewarding work and maximize their earning potential by             results.
providing resources that make managing income easy.                     Outreach will continue throughout the rest of the state
    Everyone who participated has been re-certified.               this summer.

         The Missouri Developmental Disabilities Network - Educating and Advocating

     The Missouri Developmental Disabilities Network
consists of the Missouri Planning Council, the University
Center on Excellence in Developmental Disabilities at the
UMKC-Institute for Human Development, and Missouri
Protection and Advocacy Services.
     As Missouri’s statewide developmental disabilities
resource organizations, the member groups work together to
better provide information, resources, referral, and supports
to individuals with disabilities, their families, and the
professionals who serve them.
     The Developmental Disablities Network has been
to seventeen (17) events this year. We have attended
legislative days at the Missouri Capitol, rallies for disability
rights, and many conferences that affect the disability
community. There are still many more conferences we plan
to attend in 2008.
     As time goes by, the organizations comprising the
Missouri Developmental Disabilities Network grow and
change to better advocate for the rights of people with                              Have you seen me?
disabilities. The Missouri Planning Council’s main office
has moved, and several new programs have emerged in the                The Missouri Developmental Disabilities
past year that allow MO P&A to provide more services.                Network would love to meet you at the next
Even the display board is undergoing a make-over!                    conference we’ll be attending.
     Next time you see us at a conference, be sure to visit.
The Developmental Disabilities Network will be exhibiting              Check the back page of this Alliance issue for
at the conferences listed on the next page in the Calendar of        our Calendar of Events!

Page 7                                                  Volume 1, Issue 2                                              Alliance
Missouri Protection & Advocacy Services                                                                                                               NON PROFIT ORG
                                                                                                                                                        US POSTAGE
                                       Primary Business Address                                                                                             PAID
                                       925 South Country Club Drive
                                                                                                                                                    JEFFERSON CITY MO
                                       Jefferson City, Missouri 65109
        moadvoc                        Phone: 573-893-3333
                                       Toll Free: 866-777-7199                                                                                         PERMIT NO 58
                                       Application Unit: 800-392-8667
                                       Fax: 573-893-4231

Publication Information:
Alliance is published by Missouri
Protection and Advocacy Services,
925 South Country Club Drive
Jefferson City, MO 65109

Colan Holmes,
Public Relations

                    Mary Heckman,

Opinions expressed in these articles
are those of the writers and do not
necessarily express the opinions or
                                          The mission of Missouri Protection and Advocacy Services is to protect the
positions of Missouri Protection and    rights of individuals with disabilities by providing advocacy and legal services.
Advocacy Services.
                                       Alliance is made possible by several grants from the Social Security Administration, the Department of Education, and the Department of Health and Human Services.

                                  Be part of the Alliance!
   Alliance aims to provide news and information relevant to individuals with
   disabilities, their families, and the professionals who serve them.

   If you or anyone you know would like to receive future copies of Alliance, or if
   there are issues you’d like to see in future publications of Alliance, please address
   your requests to:
                                          Alliance Editor
                          Missouri Protection & Advocacy Services
                                    925 S. Country Club Dr.
                                   Jefferson City, MO 65109

                                                         - Calendar of Events -
                      Date                                      Event                                          Location                                        Contact
              Aug. 13-15, 2008                     APSE-MO Conference                             Isle of Capri Conference                                (573) 221-5991
                                                                                                      Center, Boonville
              Sept. 10-12, 2008                  MO Governor’s Conference on                     Hyatt Regency, Kansas City                               (573) 522-1593
                                                   Economic Development
              Sept. 21-23, 2008                    Special Education                                    Tan-Tar-A Resort,                                 (573) 426-2640
                                               Administrators Conference                                Lake of the Ozarks
                Oct. 1-4, 2008                 Brain Injury Association of                               Embassy Suites,                                  (314) 426-4024
                                                        Missouri                                           St. Charles