Why should you care

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					           SPEAK UP
         Legislative Process Workshop
              National Society of Genetic Counselors
                  Annual Education Conference
                         November 2000

Ken H. Takayama, J.D.                Sylvia M. Au, M.S., C.G.C.
Assistant Director for Research      State Genetics Coordinator
Hawaii Legislative Reference         Hawaii Department of Health
Bureau                               (808) 733-9063
(808) 587-0666
Why You Need to be Involved
   You want to make sure that when your state
    discusses genetics related legislation, YOU
    are at the table
Why should you care?
 Professional licensing
 Protection from tort liability
 Prohibition of genetics discrimination
    Insurance

    Employment

    Other

 Medical Record Confidentiality
 Mandated insurance coverage for genetic
  counseling services
Even if you are not trying to
pass any legislation, you should
still care
 It is just as important to “kill” poorly
  conceived legislation as it is to pass good
 It is a good idea to have legislators and
  legislative staff get used to you as an
  authority in genetics
 You only make this happen by participating
 It paves the way when you want to pass your
  own legislation
How are these things done?
All Roads Lead to the Legislature
Civics 101: Typical Legislatures
 Consists of two houses: Senate and House
  of Representatives (sometimes also referred
  to as the Assembly)
 Have members who are elected to represent
 Are organized along partisan lines (i.e. the
  party having the majority of members
  controls the operations of that body)
Civics 101: Typical Legislatures
   Meet in session during specified periods
     CA, MA, IL, and WI often meet for most

      of the year
     Most legislatures typically are in session

      for about 2-6 months
     Some legislatures (TX, NV, and others)
      meet only every other year
Civics 101: Typical Legislatures
 Have official meetings in the chambers
 Do most of the real work through various
 Work of the committees is directed by their
  respective chairs
 The committees will typically be the forum
  for your input
Civics 101: Typical Legislatures
 Consider bills as vehicles to enact or change
  laws or propose constitutional amendments
 May amend a bill (proposal) more than once
  before passage in that house
 May require conferencing between
  members of both houses to iron out
Civics 101: Lawmaking
 A bill cannot become law unless both houses
  agree to enact the same version of that
 After legislative enactment, the governor
  may still veto the measure thus preventing it
  from becoming a law
 Any law is always potentially subject to
  court challenge if people believe it violates
  higher law or was enacted improperly
Civics 101: Lawmaking
   If it sounds hard to add or change a law

   You’re right, it’s supposed to be that way

   Don’t be discouraged, it can be done
What Do You Want to Do?
How do You do What You
 Decide  your issue.
 Enlist colleagues who care about
  the same issue.
 What do you want to get done?
 Are you sure?
 What are the advantages and
  disadvantages of your proposal?
Can you do it?
   Think about any barriers or restrictions on
    your involvement in this process
      Employer restrictions?

      Family or professional restrictions?

      Geographical restrictions?
Don’t Reinvent the Wheel
   Possible resources
      Your colleagues

      Professional genetics organizations

      Coalition of State Genetics Coordinators


      National Conference of State Legislatures
      Statutes from other states

Decide What You Want
   Practice Protection (Licensing) vs Title
    Protection (Registration)
   The Key Difference—practice protection
    makes it ILLEGAL for someone to practice
    that profession or vocation unless they are
   Title Protection allows people to practice the
    profession or vocation as long as they don’t
    use the TITLE (e.g., “Genetic Counselor”)
What’s in it for Others?
   What problems are being caused by a lack of
   If so, what are they? Fly-by-nights? Scam
    artists? Incompetents?
   How do you know? Do you have data?
   Do you REALLY have to have this
    information to get regulated? No, but it helps
   Hint — It could be useful to have some really
    great horror stories
Address the Nuts and Bolts
   What standards are required for regulation?
   Which agency will oversee the regulation of
    your profession?
   Have you spoken to the prospective
    regulators to find out their attitude toward
    regulating you? (Note: It’s more work for
   Are the agency’s regulatory programs self-
    financing (i.e., do the licensing/registration
    fees have to cover the costs)? If so, what are
    your fees likely to be?
Do you still want regulation?

The ultimate question:
Who might not want licensing?
  For example: Because licensing could restrict the
  number of people who work as genetic counselors,
  this may improve salaries for licensees.
Opposition may come from:
 Doctors and medical facilities who hire
    genetic counselors as employees
   Nurses and other professions if they believe it
    reduces their scope of work
   Health insurers (if they believe it will raise the
    cost of medical treatment)
   Prospective regulatory agency whose
    workload might increase
Bring in the Outside World
Can you do it alone?
   Barring the most unusual circumstances - not
    likely or not very effectively
   Enlist friends and allies
   You’ll need to be in agreement. Therefore,
    YOU may need to COMPROMISE on your
    concept or proposal
   And you haven’t even dealt with a politician
Opponents and Undecided
 Determine who your likely opponents
  will be
 Determine who might be in-between
 Determine who among them you can
  swing to your side—or at least
 This could mean further COMPROMISE
Divide to Conquer
   Divide duties among your group of
      Who will speak to legislators and staff?

      Who will take the lead in testifying?

      Who will serve as the liaison with
       community advocates?
      Who will represent the group with the
How do you decide who
does what?
   Factors that could be relevant:
      Experience

      Knowledge of subject matter

      Ability to present position clearly and

      Personal connections

      Rapport

   Remember, some of your best people may help
    your cause from entirely behind the scenes!!
Do your homework on your state
   legislative process and the
The Legislative Process
   For a general overview, materials may be
      Through your legislature’s library

      From individual legislators

      Your state’s (or legislature’s) website

      Community organizations (e.g. League of
       Women Voters, local medical association,
       March of Dimes) who deal with the
Information about legislators
   How do you find out about legislators?
     Read articles about the Legislature and

     Check their websites

     Go to hearings to see them in action

     Talk to legislators about themselves

     Talk to people about other people
Talking to Legislators
Factors making certain legislators particularly
  desirable as supporters:

 Leadership positions
 Chairs or members of key committees (as
  they relate to your bill)
 Respected or well regarded with respect to
  particular issues
 Strongly agree with your position
If you don’t have access to these
       legislators, then…
Other Approaches:
   Do you or your friends/allies know any
    legislators personally who you think would be
    sympathetic (whether or not they can be
   If you don’t know any legislators, then if
    nothing else, approach your own
    representative or senator as their constituent
   Whoever you talk to, find out what’s real,
    what’s possible, and what’s not
   Using those leads start talking to others
Keep talking to legislators
 Everyone you speak to can clue you in
  to other legislators or groups who might
  be helpful or opposed. All of this
  information can be useful.
 As you talk to more people, you may
  find that you need to modify your
  proposal in various ways. In other
  words, more COMPROMISE
Information to Elicit
from Legislators
 Willingness to take lead in supporting or
  co-sponsoring bill
 Ability/willingness to sponsor bill (e.g. may
  have bill limits)
 Willingness to help or have bill drafted
 Level of “emotional” support for bill (e.g.
  family member with genetic condition)
 Ability/Resources to help you throughout
  the process
When the Rubber Meets the Road

Decisions, Decisions
   Use information gained to:
     Choose who you will ask to lead the
      effort to get your bill introduced and
      passed in each house
     Determine what type of assistance others
      can provide
     Develop strategy to increase base of
Working with the legislator(s)
 Develop specifications of the proposed
 Use this opportunity to clarify that you and
  your sponsor legislator(s) agree on the
  specifics of the proposal
 Get the bill drafted by an appropriate staff
 Review the bill to make sure it meets your
 Make sure you understand the bill
How A Bill Becomes a Law
The Session
 Bill gets introduced into the first house and
  referred to one or more committees
 Work with supporters to have bill scheduled
  for a hearing in every committee
 Typically, most bills die in committee
 Remember to search for other genetics
  related bills which have been introduced
Committee Hearings
 Make sure you know the date and time of
  the committee hearing for your bill
 Make sure to show up in person to give
  testimony or at least submit written
  testimony (Note: make sure you include
  your contact information)
 Be prepared to answer questions and
  criticisms (much like defending a thesis)
 Use the hearing as an opportunity to educate
Post-Committee Hearing
 Be prepared to work with Committee staff
  on any proposed amendments to the bill or
  justify why they shouldn’t amend it
 Get a copy of the committee report and draft
  of the bill if changes are made
 Be prepared to react quickly on the position
  you will take concerning the bill if changes
  have been made
Repeat Process Over and Over
Again for Every Committee to
  which the Bill is Referred
 Remember: Unless you’re in Nebraska, the
  legislature has two houses
 Therefore, after you’ve done everything to
  pass the bill through the first house, you
  have to do it again in the second
 If the second house makes any changes
  to the bill that the first house does not agree
  to, it sets the stage for …
 Representatives from each house meet to
  “iron out” the differences in their respective
  versions of the bill
 Although hearings are not typically held,
  you may be able to work with conferees on
  both sides (e.g. by supplying appropriate
  language to be added or changed)
 Practically speaking, the conference time is
  a period of much horse trading and hostage
After Enactment
 If the bill is approved by both houses, it is
  deemed enacted and goes to the governor
  for approval or veto
 The governor may veto a bill for any reason
  or no reason at all, and sometimes may do
  just that
 Enlist your supporters to let the governor
  know about the support for the bill
Things to watch out for:
   Most states have:
      A deadline by which all bills must be

      A deadline by which bills must be passed out

       of the first house and sent to the second
   Learn as much as you can about specific
    procedure requirements in your state
   Remember: Notice requirements for hearings and
    other matters may be very short or non-existent
    You Can Always Use

A Little Help From Your Friends
What can you do to keep tabs on
what’s going on?
 Legislative public information services:
    Public access information numbers

    Internet resources

    Legislators’ district offices

 Ideally, have people at the Capitol all the
 Realistically, become friends with staffers at
  the Capitol who can help you get
What can Legislators/staff do
besides vote for your bill?
   Plenty
      Help you keep track of measures

      Let you know about upcoming hearings

      General "intelligence“

         What people are saying/thinking/doing
          about/to your bill
         Who it might be helpful/necessary to talk to

         What kind of information you need to supply
          and to whom
Working with legislative staff
 Legislative staff come in many forms:
    Personal staff to individual legislators

    Staff assigned to legislative committees

    Staff assigned to legislative leadership

    Partisan and non-partisan staff offices
     who do not work specifically for
     individual legislators
 Staff hierarchy tends to reflect the
  legislative hierarchy
Working with Legislative Staff
   The staff usually need to translate the
    decisions/intent of the legislators into documents or
    products (e.g., amended versions of bills,
    committee reports)
   They may need information from you on short
   They can sometimes influence legislators’
    decisions if asked to provide input
   Even though they don't have a vote, they can help
   Be nice to them
So What’s It All About?

Lots of things, they include:
Knowing who your friends are
 Which people are your supporters who will
  vote for your bill
 Who are truly your champions who will not
  only vote for your bill but will actively
  promote your cause
 Who is wavering but still possible to
Knowing who your friends may be
   Who (if any) might "have to" oppose your bill if
    forced to vote on it, but who could help in other
    ways, e.g.:
      Voting your way on a procedural motion that
       doesn't reflect the substance of the bill
      Willing to "take a walk" so as not to be in the

       room when the vote on your bill comes up
Educating people
 To be successful and effective, be ready to
  educate, educate, educate
 This is what lobbyists do best
    Who:    Anyone who will listen
    When:   Constantly
    What:   Anything that promotes your
Legislators are people too, albeit
busy ones
   They can be informed about new things
   They are constantly besieged by people who want
    things from them
   They hear a great deal from bureaucrats and
    professional lobbyists. It can be a refreshing
    change to hear from real people – like you
   Real people affected with real disorders have a
    huge impact
Legislatures are NOT Monolithic
   They are like complex communities of smaller
      A number of those organisms work together

      Others work against each other on many
      Some may not even speak to each other

      The "lineup" of who falls into which of the
       foregoing categories can change over time -
       sometimes from one day to the next
   You do not "work with" or "give information to"
    THE Legislature
      You may do each with a group here and there

      But be ready to work with or give information
       to each house, each committee in each house,
       and if necessary, each legislator on each of the
       necessary committees - not to mention others -
       one at a time, all day, every day
   Like selling cookies door-to-door, you don't sell
    them to "the neighborhood"- you sell them to
    each family, one house at a time

What Goes Around, Comes
   People will probably treat you in the manner that
    they feel you have treated them
   If you believe the adage that "The Customer Is
    Always Right", a Legislature is an excellent forum
    in which to practice this - constantly
   For better or worse, Legislatures can be the most
    HUMAN institutions in this society-you encounter
    the entire range of personalities and behaviors
Think of your involvement in the
legislative process as the best test
  of the professional skills you
 have acquired and developed as
        genetic counselors

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