Spina Bifida Information Act: Guide to Introducing Legislation for the Spina Bifida Community

March 26, 2015   Opinion

Colleen, Blogger at Choo Choos and TuTus | Source

Sunday, March 22, 2015

Colleen, Blogger at Choo Choos and TuTus
Louisville, KY, United States

Kentucky, United States —Kentucky recently passed the Spina Bifida Information Act, which ensures that when healthcare professionals who give parents the Spina Bifida diagnosis, they will give them written, up-to-date information about Spina Bifida, as well as contact information to the Spina Bifida Association of Kentucky. SBAK and local families were involved in the process and learned lessons along the way that can help other chapters and families advocate for similar legislation in their own states.

First, let’s take a look at the legislation passed in Kentucky. Fortunately for us, the local Down syndrome organizations had successfully advocated for a bill regarding the Down syndrome diagnosis in 2013, and we could use their efforts as a guide. In fact, our bill sponsor chose to simply amend the Down syndrome legislation to add Spina Bifida.

It is important to note that this legislation is neither pro-life nor pro-choice. It is only pro-information. We simply want doctors to give parents accurate information about Spina Bifida and resources for support. We are not asking that they recommend or discourage any one course of action. We trust that parents will make the best decision for their baby and family when given good information and support. By leaving out the abortion issue, the legislation is much more likely to get passed, and healthcare professionals are much more likely to abide by it.

The Kentucky law reads as follows:

AN ACT relating to the provision of information relative to spina bifida.

Be it enacted by the General Assembly of the Commonwealth of Kentucky:

Section 1.   KRS 211.192 is amended to read as follows:

(1)     For the purposes of this section:

(a)     "Down syndrome" means a chromosomal condition caused by cell division that results in the presence of an extra whole or partial copy of chromosome 21; and

(b)     "Spina bifida" means a neural tube defect, the most common of which is the open neural tube defect Myelomeningocele.

(2)     A health facility as defined in KRS 216B.015(13), physician, health care provider, nurse midwife, or genetic counselor who renders prenatal care, postnatal care, or genetic counseling, upon receipt of a positive test result from a test for Down syndrome or spina bifida, shall provide the expectant or new parent with information provided by the Cabinet for Health and Family Services under subsection (3) of this section.

(3)     The Cabinet for Health and Family Services shall make available to any person who renders prenatal care, postnatal care, or genetic counseling to parents who receive a prenatal or postnatal diagnosis of Down syndrome or spina bifida and to any person who has received a positive test result from a test for Down syndrome or spina bifida the following:

(a)     Up-to-date, evidence-based, written information about Down syndrome or spina bifida that has been reviewed by medical experts and Down syndrome or spina bifida organizations and includes information on physical, developmental, educational, and psychosocial outcomes, life expectancy, clinical course, intellectual and functional development, and treatment options; and

(b)     Contact information regarding support programs and services for expectant and new parents of children with Down syndrome or spina bifida, including information hotlines specific to Down syndrome or spina bifida resource centers or clearinghouses, national and local Down syndrome or spina bifida organizations such as Down Syndrome of Louisville, Down Syndrome Association of Central Kentucky, Down Syndrome Association of South Central Kentucky, Green River Area Down Syndrome Association, Down Syndrome Association of Greater Cincinnati Serving Northern Kentucky, Council on Developmental Disabilities, the Spina Bifida Association of Kentucky, and other education and support programs.

If you would like to see similar legislation in your state, here are some tips for advocating to your state legislators.

1. Brush up on your high school civics. Here’s a good refresher on how a bill becomes a law at the state level (PDF): How a Bill Becomes Law. In a nutshell, a senator or representative needs to sponsor the bill and introduce it to a committee in either house. Let’s say it is introduced to the Senate Health and Welfare committee. After it passes there, it goes to the Senate floor for the entire body to vote on. Next it needs to be picked up in a House committee. After it passes in that committee, it goes to the House floor to be voted on. Once it passes there, it goes to the governor’s desk to sign. Unless the governor vetoes the bill, it becomes law.
You also need to do some research about your state’s legislative session so you can understand the proper timeline of your bill. If there are 10 days left in the session, it’s too late to introduce a bill and it may be better to wait until the session ends so your legislator can prepare to introduce at the beginning of the next session. It would be a shame to get 3/4 through the process by the time the session ends, and then have to start all over again next session.

2. Find out whether your state already has a similar law that includes spina bifida or another diagnosis such as Down syndrome. Every state has a legislative web site that you can find with a little internet searching. Or you can call your representative’s office and ask.

3. If you don’t already know, find out who your state legislators are. Simply Google: Who are my legislators (type your state). Every state should have a web site where you can type in your address and see who is your state senator and representative as well as their contact information. Remember that these are the people who want your vote and are likely to be receptive to your concerns.

4. Call your legislators and ask for a meeting with each of them. An in-person meeting will be the most effective and impactful way to communicate with them. If you cannot travel to the capitol, they probably also have an office in your district. If an in-person meeting is not possible, you may also call to leave them a message or write them a letter or email.

5. When you meet with or otherwise communicate with your legislators, bring along a copy of the Kentucky legislation (copy it from above and paste it in a document to print) and ask them to sponsor a bill in your state. Providing them with the Kentucky wording makes it even easier for them to sponsor legislation because they have a template to start from that has already been successful in one state. You may choose to include or omit the language on Down syndrome. You may also consider asking your local Down syndrome organization or a family you know if they would be interested in helping you advocate for legislation that includes both diagnoses.

6. During the meeting, it is important to tell your story. Think about what you will say in advance so that you can tell your story succinctly but also make your point about the impact this law would have on families in your state. Remember that your senator and representative are humans just like you who have families and most likely ran for this position so they could help people. Again, try to avoid making the issue too political. If you’re telling your diagnosis story, you can certainly tell about your doctor pushing abortion if that is part of your story. But keep the focus on the ethical reasons for doctors giving accurate and up to date information so that expectant parents can make informed decisions.

7. If neither of the legislators that represent you are willing to sponsor a bill, you can look for others in your state legislature who might be interested. Perhaps there is a senator who is especially interested in disability matters. Every state has a Council on Developmental Disabilities that may be helpful in identifying disability friendly representatives. You may also seek out legislators in leadership positions, who may have more success in pushing a bill through. For example, in Kentucky the senator who serves as the Chairwoman of the Health and Welfare Committee sponsored the bill, which made sense because this bill fell under the committee’s domain.

8. If a legislator decides to sponsor your bill, you can now advocate for the bill by contacting others on the committee who will be voting for it to explain why it is important and to ask for their vote. Keep track of its progress and try to be present to testify for the bill when it comes up for a vote in the committee.

9. We learned a few lessons about testifying to the Senate Health and Welfare committee before they voted. First, they really did not need to hear our testimony. They had already read the bill and were ready to vote favorably, but they gave us an opportunity to testify anyway. We had four people there, but we narrowed it to two people, and even that was more than needed. The most effective testimony was a mother’s story about her horrific diagnosis and to compare that to her son now. Her cute two year old was brought into the room and charmed everyone. Although they didn’t need to hear testimony, they enjoyed the story and it left an impression on everyone in the room. Just be mindful to not talk too much. These are busy people who are trying to get through a lot of work in a short amount of time. And it is possible that the more you talk, the more opportunity they will have to think of objections and problems with the bill. When we went to testify to the House Health and Welfare Committee, we simply stated our names, told them we had statements prepared if they would like to hear them, and otherwise we would answer any questions they had. They had none, and the bill passed the committee within seconds.

10. After the governor signs the bill, request a public signing so you can bring some families for a photo opportunity and potentially some press.

11. Have a plan for how to help implement the plan. In Kentucky, the Cabinet for Health and Family Services will be responsible for ensuring doctors have the information they need to distribute to expectant parents. But the Spina Bifida chapter/organization can work with them to provide the right information. Currently, the best documents to use are found on spinabifidaassociation.org in their section on Health Information Sheets (PDF’s):

12. Please feel free to contact me or the Spina Bifida Association of Kentucky if you have any questions. Good luck!