reflections related to disability advocacy, family and (needed) cultural change
Wednesday, November 04, 2009
My Testimony at NY Senate Finance Committee Budget Hearing
On Monday I gave testimony at the NY Senate Finance Committee Budget Hearing in Buffalo. It was a long and interesting day... I will have more to say about that tomorrow.Here is my testimony:
Thank you for the opportunity to speak to you this afternoon about our state budget.
As a the mom of a child with Down syndrome, and as a member of the board of the Flower City Down Syndrome Network in Rochester, I am upset both by Governor Paterson's Deficit Reduction Proposal and by the Republican counter-proposal to make severe cuts to Medicaid services. These cuts unfairly victimize people with disabilities.
As a homeowner I know that neglecting a leak in my roof will lead to damage to my ceilings, then to my furniture, then to my rugs, then to my other belongings, eventually damaging the house’s very foundation, and I might even lose my house. Because of this cascade of ever-worsening problems, fixing even a small leak in my roof becomes my priority. Even when my budget is tight.
I submit that the people of NY—people like my daughter--respond to neglect much the way my house does to a hole in its roof. I believe that the proposed cuts to the OMRDD and Medicaid, and the cascade of damage that will follow for New York, and for New Yorkers and for my little girl, should not be allowed to happen.
The OMRDD provides funding for services for people with Developmental Disabilities including those with Down syndrome. This funding brings in Federal matching money which I know our state can't afford to lose. .
Agencies which rely on both OMRDD funding and Federal matching funds may well find that grants they receive from other sources are jeopardized by these cuts as well. Some of these agencies may be forced to close their doors, most will have to cut services and staff. Where does that leave our kids?
Increased unemployment--both of caregivers and of people with Down syndrome and other disabilities--is another problem our state simply cannot afford.
Unmet care needs and fewer caregivers will lead to deteriorating health and increased burdens on the state’s life-care and healthcare systems. We can’t afford this either.
People with Down syndrome and other Developmental Disabilities really have no private options for meeting their needs. They contend with a dismal unemployment rate. And the pre-existing condition of their disability necessitates Medicaid eligibility. Consequently, very few have more than $2000 to their names, making it virtually impossible for them to afford anything else.
These proposed cuts unfairly and unnecessarily victimize people who already live in poverty. This is wrong for my daughter—it’s wrong for anyone’s child.
As our legislators you must find ways to re-structure necessary budget-cutting without laying the burden on people who have Developmental Disabilities like Down syndrome--who have nowhere else to turn.
(I took the picture from the back of the room... you can see the crowd and the senators on the stage. In the crowd are many folks in orange--they are from ADAPT.)
I am the mother of three, wife of one. I am a Partners in Policymaking graduate and a committed disability advocate. I want to catch up on my scrapbooking, learn more about art-journaling, get my house in order, read all the books I have set aside to read and change the world--not necessarily in that order. The opinions in this blog are my own and not those of any of employers.