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.
 |
| After testifying for the bill, I was interviewed by a reporter for our local government channel. |
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!
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