Tuesday, May 12, 2009

Disability Rights Action Alert for May 13 National Call Day

Disability rights groups have called a National Call-In Day for tomorrow, May 13. It's in support of the Senate Finance Committee's report on health care reform, released only yesterday. This report offers major support for our children with disabilities. It expands the medicaid waiver programs, designed to provide the supports needed to keep our kids home with their families, eliminates the waiver program waiting lists that plague many states, eases the medical requirements for entry into the medicaid waiver programs, and increases the FMAP (Federal matching funds) by 1%. There are other benefits for our kids, but these are the ones that, as a parent, give me the most hope for my daughter's future. The May 13 National Call-In to the Senate has been announced by the Consortium for Citizens with Disabilities. Disability rights groups around the country are spreading the news. The CCD has even provided an example script for call-ins, but if we are going to call as the parents of children with disabilities (and I think we need our voices heard), the script needs to be altered a bit. Here is the entire report that was released yesterday. The section on long-term care and the Medicaid HCBS (Home and Community Based Supports) waiver programs begins on page 49. Please participate in tomorrow's call-in. It could have a tremendous impact on our children's future. The procedure for tomorrow is:
When: Wednesday, May 13 (Between 8AM and 6PM EDT) Call-In Number: 1-866-459-9232 (Toll Free) You will be asked which state you are calling from and will be connected to your Senators’ offices.
Here is the sample script being distributed via the CCD:
Hello (state your name and where you are calling from). I’m calling to ask the Senator to help make sure long-term services and supports are part of health care reform. Long-term services and supports are essential to the health, well-being, and community participation of individuals with disabilities and seniors. Please ensure long-term services and supports are included in legislation to reform health care. Thank you.
You might want to think about this as an alternative, to reflect our role in the discussions:
Hello my names is {...} and I'm calling from {city} in {state}. I’m calling to ask the Senator to help make sure long-term services and supports are part of health care reform. I'm the {mother,father,grandmother,etc} of a child with disabilities, and these long-term services and supports are essential to {his/her} civil right to remain with {his/her} family. Please ensure long-term services and supports are included in legislation to reform health care. Thank you.
Here is the list of US senators, and you can sort it by state. Remember, it's best if you call rather than emailing or using their form online. Priority in the senate offices is always given to telephone calls, and you can use the toll free number I listed above to then get transfered to your senator's office.

1 comment:

  1. This is wonderful news! So many children go without needed services here in CT because there is not enough Medicaid slots and/or approved Medicaid providers. Will this reform allow small practitioners such as OT, PT and Speech therapists get approval as Medicaid providers?

    My daughter receives OT and PT services from a small private therapy clinic in our town. For some reason the State will not approve the clinic for as a Medicaid provider for OT and Speech services. However, they are approved for PT.

    The clinic has been told by the State that the reason for the denials is because they are not “big” enough. That makes no sense to me (or to them). The same clients that receive PT also receive Speech and OT services. How can one part of a practice be an approved Medicaid provider while the other parts are not?

    States make it almost impossible for small clinics and single practitioners to do business. Here is a source of funding that is out of reach for many professionals and in the end children cannot get needed services near their homes. From what private insurance covers and what we can afford to pay out-of –pocket after the benefits run out we end up piece-mealing our children’s therapy. The alternative in our area is to drive miles and miles out of our way to the nearest approved Medicaid provider for all the therapies which for us is the Children’s Hospital 25 miles away.

    It’s wonderful that additional funding will be available; however, I believe for this to be truly effective the states need to approve smaller practitioners and private clinics as full service Medicaid providers as well. What good is having a funding source if you can’t access it?

    Brenda J. Sullivan
    CT Disabilities Connections LLC


About Me

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I'm the mom of a child with disabilities. Hannah's first neurologist said she might never develop beyond the level of a 2 month old infant, and there wasn't anything I could do about it. The brain damage was just too severe. Nine years later, she walks, uses a touchscreen computer and I've just been shown she can learn to construct sentences and do simple math with the right piece of technology. Along the way, I discovered I needed to teach myself what Hannah's rights to services really were. Learning about early intervention services led to reading about IDEA and then to EPSDT. I've been waiting for the Obama administration to realize the power and potential of EPSDT for the medical rights - including the right to stay at home with their families - of children with disabilities. The health reform people talk about long term care, and the disability people talk about education and employment, but nobody is talking about EPSDT. So I am.