If you care about the future for people with Down syndrome, we need your advocacy NOW.  Here’s why:

Medicaid funding is critical to families in our community and it is being threatened.

When we say Medicaid, we are not just talking about paying for doctor’s visits. We are also talking about critical support services throughout the lifespan —  behavioral supports,  residential aides, job coaches – all the services that can make the difference between holding a job, succeeding in school and otherwise living in the community and sitting in front of a TV at home all day.

With our last convention, we began actively encouraging families to think Out of the Box – to start planning for adulthood early.  Even with planning though, costs are often beyond what families can shoulder alone.  That’s where Medicaid waivers come in – they provide a safety net for people with disabilities by paying for supports that families cannot afford.  To put it bluntly, MEDICAID HELPS KEEP OUR KIDS OUT OF INSTITUTIONS.

A draft of the Senate version of the AHCA will be released today.  The process of getting it passed will move quickly and is set to start on JUNE 26 – FOUR DAYS AWAY.  It is expected to mirror the House version of the AHCA, including a provision that changes the Medicaid system to CAP AND CUT FUNDING.

Once the structure is changed in this way, there will be no going back.  Wait lists will grow and services that individuals with Down syndrome rely on to live and work in the community – therapy, residential supports, transportation, job coaches – COULD DISAPPEAR.  It will reduce funding available to pay for early intervention, therapy and other services in schools, and it will mean the federal government can begin siphoning off funds from the Medicaid every year to pay for other items.


Here is what you need to do:


  • Call email, tweet your Senators:  Include a photo of you or your loved one who relies upon Medicaid and a brief explanation of the cuts will hurt you or your family.  Use the hashtags #NoCapsNoCuts and #SaveMedicaid.  Tell them your loved one is at risk of losing critical Birth to Three interventions, in-school therapies, or employment or residential supports!  This affects ALL OF US, even if we are not receiving Medicaid supports at this time.
  • Go to your Senator’s local office.  Meet with Staff.  Print out your story and leave it with them.

We only need a handful of Republican Senators to break with party ranks and vote against this bill.  SHARE THIS EMAIL WITH FRIENDS AND RELATIVES IN OTHER STATES  and ask them to take action, especially if they live in Alaska Nevada, Maine, West Virginia, Arizona, Colorado, Ohio, Pennsylvania and Arkansas.  ALL Republican Senators should be blanketed with calls and emails though.




Need details? Talking points?  See the NDSC’s detailed analysis of how the AHCA will harm the Ds community and sample talking points for sharing your story from the Center for Public Representation.


Find your Senator here, find your Senator’s official Twitter here.


In Connecticut, we face an additional threat: The General Assembly has not yet agreed to a budget.  If no agreement is reached by June 30th, Governor Malloy will be empowered to make cuts to programs and services without legislative approval.


Among the cuts the governor has proposed are ELIMINATION of day and employment funding and Community First Choice (CFC), a new Medicaid waiver program.  CFC is currently the ONLY FUNDING AVAILABLE for residential support and other services for those not already receiving them.  While only a year or so old, it has proven to be very efficient and highly beneficial for those who have accessed it.  It truly does not make sense to eliminate it!


Please take five minutes to call or email your legislators with the following message:


Subject Line:  “People with IDD are counting on you to stand up for the basic services they need to live their lives.”

My name is [insert your name].  I am your constituent and I live at [insert address].  I am contacting you today to ask you to tell your leaders that you cannot and will not support a budget that will decimate services for your constituents with IDD and their families.

[Insert a brief explanation of why this is important to you and what these cuts would mean to you and your family or OTHERS LIKE YOU.]

My email address is [insert email address]. Please respond to me by email on this issue.

Thank you.

Click here to find your legislator’s contact information.