For 36 years and counting – every day of her son’s life with Down syndrome – Dyanne Stewart has had to take care of Ronnie Dean Stewart Jr.
At 60 – her back and legs aching so badly that she can barely walk, and her legs and arms showing bruises from falls – Stewart bathes Ronnie. She changes his adult diapers. She takes him to the bathroom and feeds him and hugs him and tells him that he matters.
“And if it wasn’t for the disabilities people, I don’t know what I would do,” Stewart said. “I would be nowhere.”
Stewart is worried because the York County Council is looking to balance the county’s budget for 2015-16 – and reducing how much the county spends to support the York County Board of Disabilities and Special Needs has been proposed as one place to cut.
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These are the folks who are spending millions of dollars to renovate the county courthouse and hundreds of thousands of dollars to pay lawyers in the county’s squabble over the crumbling MorningStar Ministries tower – and they’re actually considering balancing the county’s $214 million budget by taking pennies away from the neediest among us.
The disabilities board is a private, non-profit corporation – run by a local board of directors – that gets most of its money from the federal Medicaid program, state disability money, grants and other sources such as fundraising, donations and the United Way of York County. It has been around since 1980.
Last year, York County leaders gave the disabilities board $108,000 – $21,000 more than what state law requires them to give.
One politician had the nerve to call the money the county spends to support the disabilities board – and the services it provides to the Dyanne Stewarts and Ronnie Stewarts of the world – “charitable giving.”
Stewart has spent more than 13,140 straight days caring for her son – who cannot take care of himself and never will – and a politician calls what little she gets in diapers and assistance “charity.”
A day at the Stewart home starts at 6 a.m., usually with washing after nighttime accidents, followed by a breakfast of oatmeal, getting dressed and trying to live a life. It ends around 9:30 each night when Ronnie falls asleep and his mother falls into bed more tired than the day before, if that is possible.
Ronnie can say a few words, but he really can’t talk. He sings one line from an Elvis song over and over because he loves The King. He can watch car races and football on TV and go for short walks.
Because he requires constant, daily supervision and care, his mother has been at his side for 36 years. His parents are divorced – but his father, Ronnie Dean Stewart Sr., still lives at the family home and helps take care of his son.
For more than 10 years, the Stewarts have been clients of the York County Board of Disabilities and Special Needs.
Ronnie receives disabilities benefits from the federal government. He is on Medicaid, but there are co-payments and other financial gaps.
The disabilities board fills those gaps, helping more than 300 York County families, just like the Stewarts.
Politicians call it charity.
Dyanne Stewart calls it adult diapers and a person who comes to the house to help with Ronnie, so all her days are not like the last eight months – during which the weight of 36 years has caused her to fall down while at the store and at home, where the hallway walls are bare drywall because paint costs money.
Five mornings a week, the disabilities board provides a personal care assistant, who comes to the mobile home at the end of a dirt driveway outside Clover. The assistant helps Stewart with everything she does for her son. The board’s programs help by paying for diapers and by providing Medicaid waiver coverage that pays for nutritional supplements, incontinence supplies and other necessities for Ronnie.
That financial help keeps Stewart from having to spend the family’s food stamps on meals for Ronnie – and going to bed hungry herself.
Stewart also gets a tiny amount from a disabilities board program designed to help on weekend and other times when she is all alone with no personal care worker to help with Ronnie. She works too little – and gets paid too little – to qualify for health insurance herself.
She takes care of her son – and she prays every day that her own health does not collapse.
“I do what I have to do to make it,” Stewart said. “You get up and you do it. I love my son, and I always will love him, and I will do whatever I have to do to care for him.”
The disabilities board handles social work and programs for children and adults with small problems and severe problems, such as Ronnie Dean Stewart Jr.’s Down syndrome, said Denise Leong, the social worker/case agent who has assisted the Stewart family for more than two years.
The help the disabilities board provides, Leong said, is the difference between Ronnie being able to stay at home and having to be placed in a care facility – or an institution.
Stewart does not know what she would do if help from the disabilities board went away. No politician would ever come to her home and tell her to her face. The benefits would just stop.
But Dyanne Stewart will not stop.
“I am not a charity,” she said. “I am a mother of a 36-year-old son with Down syndrome who loves him.”
Andrew Dys • 803-329-4065 • firstname.lastname@example.org
Want to be heard?
What: York County Council public hearing on the 2015-16 county budget, including whether to cut spending for such agencies as the York County Board of Disabilities and Special Needs
When: 6 p.m. Wednesday
Where: County Agriculture Building, 6 S. Congress Street, York, (next to the historic York County Courthouse)