In Good Times and Bad, Arc Helps Families Cope

Tom, who has Down syndrome, attends church with his family and has been active in his church for years.
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, flashing a huge smile and extending his hand to everyone he sees. Just a couple of decades ago, all three would likely have lived in an institution, shut off from society, their lives disregarded and their gifts denied.

Judy Blackford and her husband take care of their adult son John, who has autism and spina bifida. She is passionate about sharing John’s story. Thanks to school programs and job supports, John has a good job, earns a good wage, and volunteers in his community. His earnings pay for physical therapy that keeps him strong so he can maintain mobility and stay healthy and active.

Steve Hayes and his family care for son Brett, who has severe developmental challenges, including frequent seizures and a tendency to wander if unattended.

Life for the Hayes’ is next to impossible without outside support. Personal care attendants who 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.

“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. 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 says. “We’ve applied for a place for Brett to live eventually in the community, but we’ve been on a waiting list for almost eight years and have been told not to expect an opening anytime soon.”

Now, supports that have made such a difference for so many families are threatened by state budget cuts. 5,000 families wait for services. Some, like the Hayes family, wait years. As Steve said, “Too many 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 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,” she said. “Cutting back on human services for people with disabilities reminds me of the days when they were devalued, and I fear we are heading in that direction again,” she said. “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!”

About The Arc of Minnesota

The Arc of Minnesota provides support and advocy for people with intellectual and other developmental disabilities and their families. As the state organization, The Arc of Minnesota provides leadership in partnering with 13 local and regional Arc chapters across Minnesota to provide information, educational opportunities, support, advocacy and assistance to individuals with disabilities and their families across Minnesota.

The Arc of Minnesota is a leader in the disability community in efforts to advocate for public policies that provide critical services and supports for people with disabilities and their families. The Arc has made a huge difference in the lives of people with developmental disabilities and their families for over 50 years.