February 5, 2013
Senator Craven, Representative Farnsworth, members of the Joint Standing Committee on Health and Human Services. My name is Steve Hurd. I live in Winthrop.
I’m the father of a 33 year old women with Down Syndrome named Rebecca. In addition to the cognitive difficulties common to Down Syndrome she has cardiac defect, hearing, sight, speech and neurological problems.
Back when it was discovered that Becky had a serious heart defect the physicians were willing to let Becky die a natural death. We immediately found another hospital. Attitudes have changed since then and there are a lot more resources to help families of average means to raise a child with special needs to become a responsible adult.
I will share with you …..
I used to have a recurring nightmare where Becky was showing me where she lived. Each time it was nothing more than a windowless abandoned chicken coup. Gray and ramshackle. Each time she would show me where she slept on an old mattress in the corner and I’d immediately wake up in a cold sweat.
I don’t have that nightmare any more. Rebecca lives in a group home in Winthrop. She works, plays, pays taxes, votes and has a very good quality of life.
She has grown into (somewhat) of a responsible adult.
She has surpassed all expectations that her mother and I had.
She has accomplished far more that we ever envisioned.
If you had ever told me she could get on a bus in Augusta and travel alone to see her sister in Boston . I would have said you were crazy. But the Goodwill staff has made this happen.
But I see things deteriorating – not at her Goodwill program. My concern is my peers whose children are on the waiting list for waiver 21 and 29.
Those parents are living the nightmare I used to have. My concern is for their safety and well being.
Very few families have the financial resources, the technical expertise or the physical and emotional endurance to go it alone.
There are tremendous stresses on these families… on marriages, on jobs, on careers, on siblings. I’ve seen divorces, abandoned careers, foreclosed homes, lost jobs and suicide.
Please understand the impact of your decisions goes well beyond the disabled individual.
And the ripple effect on the families will be far more costly if we don’t take positive action.
It would seem to me with the matching federal funds these two bills are a no brainer. That it might even create a few jobs in the nonprofit sector and help the economy.
For certain I know disabled young adults need your help.
Families need your help.
The agencies that provide services need your help.
In closing I ask you to please don’t let these two bills get stuck in some sort of partisan political activity. They are too important.
Thank you for the opportunity to speak. And thank you for your service to our state.