Disability services make a difference, deserve support from state lawmakers
I’d like to add another good reason to advocate for human services spending: it makes lives of dignity possible for our brothers and sisters who have disabilities and helps keep their families together. In my work, I hear their stories and see the struggles of individuals living with a disability and the families who care for them. Located throughout the Twin Cities, many are members of our churches. I look at the children and adults in my own church who have disabilities, and how they contribute to our community. Tim, whose spinal cord injury requires him to use a wheelchair, edits a local newspaper. Michael, a kindergartner with Down syndrome, circulates among adults and children at the Sign of Peace, flashing a huge smile and extending his hand to everyone he sees. Just a couple of decades ago, they and other parishioners with disabilities likely would have been in an institution and shut off from society, their lives disregarded and their gifts denied.
Today, parents and family members in our churches throughout the Twin Cities do a tremendous job of raising and caring for their sons, daughters, and siblings with disabilities. But they don’t – and can’t – do it alone.
On the east end of the metro area, Judy Blackford and her husband take care of their adult son John, who has autism and spina bifida.
Thanks to school programs and job supports, John has a job in the community performing computer data entry, earns a good wage and volunteers in his community. Every penny of his earnings, Judy said, pays for a weight program at an area therapy center that keeps his nervous and muscle systems strong so he can keeping using his walker for mobility. This has kept him healthy and active, and saved money on medical costs in the process.
On the west side of the Twin Cities, Steve Hayes lives with his family. His adult son Brett has severe developmental challenges, including frequent seizures and a tendency to wander off if unattended. “We always have to keep an eye on him,” Steve says. “His seizures can result in him falling and hurting himself if left alone. And we keep the house locked so he doesn’t stray far from us.”
Family life for the Hayes’ is next to impossible without outside support. The personal care attendants who come to their house and help care for Brett enable Steve and his wife Maureen to do laundry, mow the lawn, and meet the needs of their other children – ordinary tasks that make any household function and keep it together.
“People who don’t have a child with disabilities don’t understand how consuming it can be,” Steve stressed. “It’s non-stop. Brett needs help with every activity in his life – washing, showering, diapering, feeding, watching TV, walking …..everything. And as he gets bigger and stronger, his care becomes more demanding.”
The Hayes’ look to the future, and they’re worried. “As Maureen and I age, our biggest fear is our continuing ability to care for Brett,” Steve said. I have arthritic knees and a repaired shoulder; Maureen has had three knee surgeries in the last 10 years. All that stooping and bending and care giving for our son Brett eventually takes its toll. We’ve applied for a place for Brett to live eventually in the community with others his age, but we’ve been on a waiting list for that service for almost eight years and have been told not to expect an opening anytime soon.”
In the heart of the Twin Cities, Rachel Nelson and Wil Totten raise three children including Danny, their 19-year-old with Down syndrome. The supports he’s received so far have made a huge difference. Dedicated staff adapted his school curriculum so he could be part of the regular beginning Spanish class and play percussion in high school musical groups. “His self-esteem shot up after he started those activities,” Rachel said. “He was walking an inch taller and felt so accepted by his classmates.” He now receives some services outside of school, too, which gives his parents the chance for an occasional evening alone together—something they haven’t been able to do in years.
Now the supports that have made such a difference for so many families are threatened by proposed state budget cuts. Under at least one budget proposal, rehabilitation, physical, occupational, and speech therapies are on the cutting block for adults on Medical Assistance, including those with disabilities. State-funded dental services for adults, including those with disabilities, are targeted for elimination. Personal care attendant services for 2,100 Minnesotans could no longer be available. Budget proposals from Gov. Pawlenty, the Minnesota Senate and House all call for hundreds of millions of dollars in human service cuts.
Cuts like these could jeopardize success stories like Judy’s, Steve’s, and Rachel’s. On top of that, 5,000 other Minnesota households still wait for services. Some, like the Hayes family, wait for years. This delay exacts a price. As Steve said, “Too many of these families have passed their breaking point.” How can we talk about making dramatic cuts to services when we have so many unmet needs among those who need supports so badly?
Judith talks with me in spiritual terms about her concerns for her son and others with disabilities. “I believe we are at a critical juncture for society, for humanity, for our spiritual values. Cutting back on human services for people with disabilities reminds me of the days when they were devalued in this state, and I fear we are heading in that direction again. Now is an opportunity for all people of faith to be God’s hands, heart, voice, light, and love. People with disabilities need our voices to say that they matter to us, that we love them, and this will not happen on our watch!”
Now is a prime opportunity for all of us to let state lawmakers know that direct services for people with disabilities should be preserved, services that promote and protect the dignity of the human person and the integrity of our families.
Mike Gude is a member of St. Frances Cabrini Church and works as Communications Associate at The Arc of Minnesota, which advocates for persons with intellectual and other developmental disabilities and their families. This article is excerpted from a longer piece written for the Catholic Spirit newspaper