With growing concern, I have heard Republican leaders in Congress talk about reducing spending for Medicare and Medicaid as they figure out how to pay for their new tax cuts.
As board president of AHRC Suffolk — an agency that provides educational, vocational, residential, employment and respite services for 2,500 people through 42 local facilities — I know the good that government funding does. AHRC Suffolk receives $60 million a year from federal Medicaid programs.
But I have a personal stake, too.
In 1972, when my first child, Ellen, was born, she was a beautiful little pink bundle who bore her mom’s first name and my last name. It was a moment of joy and truth. I imagined what she would grow up to be, her role in life and whom she might marry. I knew I had to step up as a father and provide for her future.
In her first year, her development seemed to be within the normal range, including her laughter, crying and responses to us. But the next year, our optimism came crashing down. She was not talking or walking as she should have, especially compared with a cousin of about the same age. Doctors did neurological testing and determined that she had suffered some brain damage, perhaps at birth.
We entered a world of uncertainty. Doctors told us that our little girl would not speak or have proper motor function. Our hopes were shattered.
We went to various professionals to encourage her development, but were not satisfied. When she was about 4, we enrolled her in AHRC’s day classes at its Educare Center in Islip. She made progress, displaying better recognition of her family and surroundings, and responding to some simple requests — to wipe her mouth, for example, to sit down or prepare to leave. However, her cognitive development is that of an 18-month-old child. Today, she can say just two words: happy and mama.
At age 23, she became a full-time resident of AHRC’s Intermediate Care Facility in Westhampton. Later, she moved to AHRC’s facility in Shoreham, where she lives today.
Ellen, now 46, lives a comfortable life among others who also have developmental disabilities. She has her own room lovingly decorated with family pictures and things she enjoys. She is happy. On Sundays, we bring her home to Holbrook for dinner.
All of her comforts, medical care, transportation and education — costing about $182,000 a year — come under the auspices of state and federal Medicare and Medicaid programs and AHRC. It is a wonderful example of the support provided for people with disabilities, and our family sees it as the hand of God reaching down through our governments. What Ellen and her family and friends can’t do, we the people do for them.
But a hard realization has come to pass. If Congress takes away crucial funding from people like Ellen who need it, AHRC Suffolk and similar agencies will start closing.
All of us will at some point need services of the kind that Medicare and Medicaid provide — in nursing homes, hospitals or places such as those where Ellen lives. If such homes and agencies are forced to close, the burden will shift to already-stressed families that lack the skills and resources to provide proper care.
Reader Joseph Del Broccolo lives in Holbrook.