SPEAK UP YOUR VOICE COUNTS!! Legislative Process Workshop

1. SPEAK UPYOUR VOICE COUNTS!!Legislative Process Workshop National Society of Genetic Counselors Annual Education Conference November 2000 Ken H. Takayama, J.D. Assistant Director for Research Hawaii Legislative Reference Bureau (808) 587-0666 Sylvia M. Au, M.S., C.G.C. State Genetics Coordinator Hawaii Department of Health (808) 733-9063

2. Why You Need to be Involved • You want to make sure that when your state discusses genetics related legislation, YOU are at the table

3. 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

4. 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 laws • 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

5. How are these things done?

6. All Roads Lead to the Legislature

7. Civics 101: Typical Legislatures (Structure) • Consists of two houses: Senate and House of Representatives (sometimes also referred to as the Assembly) • Have members who are elected to represent districts • Are organized along partisan lines (i.e. the party having the majority of members controls the operations of that body)

8. Civics 101: Typical Legislatures (Sessions) • 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

9. Civics 101: Typical Legislatures (Committees) • Have official meetings in the chambers • Do most of the real work through various committees • Work of the committees is directed by their respective chairs • The committees will typically be the forum for your input

10. Civics 101: Typical Legislatures (Measures) • 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 differences

11. Civics 101: Lawmaking • A bill cannot become law unless both houses agree to enact the same version of that measure • 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

12. Civics 101: Lawmaking • If it sounds hard to add or change a law • You’re right, it’s supposedto be that way • Don’t be discouraged, it can be done

13. What Do You Want to Do?

14. How do You do What You Want? • 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?

15. Can you do it? • Think about any barriers or restrictions on your involvement in this process • Employer restrictions? • Family or professional restrictions? • Geographical restrictions?

16. Don’t Reinvent the Wheel • Possible resources • Your colleagues • Professional genetics organizations • Coalition of State Genetics Coordinators • www.stategeneticscoordinators.org • National Conference of State Legislatures (www.ncsl.org) • Statutes from other states

17. Example:Licensure

18. 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 licensed • Title Protection allows people to practice the profession or vocation as long as they don’t use the TITLE (e.g., “Genetic Counselor”)

19. What’s in it for Others? • What problems are being caused by a lack of regulation? • 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

20. 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 them) • 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?

21. Do you still want regulation? The ultimate question: WHAT IS IT WORTH TO YOU?

22. 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

23. Bring in the Outside World

24. 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 yet!!!

25. 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 neutralize • This could mean further COMPROMISE

26. Divide to Conquer • Divide duties among your group of advocates • 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 media?

27. How do you decide whodoes what? • Factors that could be relevant: • Experience • Knowledge of subject matter • Ability to present position clearly and succinctly • Personal connections • Rapport • Remember, some of your best people may help your cause from entirely behind the scenes!!

28. BE PREPAREDDo your homework on your state legislative process and the legislators.

29. The Legislative Process • For a general overview, materials may be available: • 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 legislature

30. Information about legislators • How do you find out about legislators? • Read articles about the Legislature and legislators • Check their websites • Go to hearings to see them in action • Talk to legislators about themselves • Talk to people about other people

31. 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

32. If you don’t have access to these legislators, then…

33. Other Approaches: • Do you or your friends/allies know any legislators personally who you think would be sympathetic (whether or not they can be supportive) • 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

34. 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

35. Information to Elicitfrom 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

36. When the Rubber Meets the Road USE YOUR COUNSELING SKILLS

37. 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 support

38. Working with the legislator(s) • Develop specifications of the proposed legislation • 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 agency • Review the bill to make sure it meets your needs • Make sure you understand the bill

39. How A Bill Becomes a Law

40. 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

41. 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

42. 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

43. Repeat Process Over and Over Again for Every Committee to which the Bill is Referred

44. Bicameralism • 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 …

45. Conference • 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 taking

46. 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

47. Things to watch out for: • Most states have: • A deadline by which all bills must be introduced • 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

48. You Can Always Use A Little Help From Your Friends

49. 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 time • Realistically, become friends with staffers at the Capitol who can help you get information

50. 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