Families. They offer us support and love and comfort. They can bring irritation and pain and sadness. They can push every button we have (after all, they installed them). Celebrate them or curse them, families are an influential part of our lives.
Families of people with disabilities are no different. The supports they need might be, though.
When we talk about families in the context of people with disabilities, we must be not to perpetuate the common tropes about disabilities. One of the most insidious of these ableist tropes is the idea that disability is this horrible thing that has afflicted the entire family. Family members are either treated as saints for their forbearance of the disabled family member, or the trauma and stress of caring for the disabled family member is used as justification for violence.
People with disabilities are frequently killed by family members as a direct result of this myth of disability. Let me be clear that there is nothing about having a disability that justifies murder.
So, let us be honest about caring for a person with a disability in the home. In many ways, raising a child with a disability is exactly like raising any child. It is rewarding and beautiful and frustrating and stressful. What can create an extra burden is the lack of appropriate support for both the person with a disability and the family that surrounds them.
Families of children with disabilities must navigate complex and convoluted systems practically from the day the disability is first identified. Though staffed with well-intentioned professionals, our medical, educational and social service systems are inadequate at best. At worst, they can be downright hostile to the needs of people with disabilities and their caregivers.
That constant fight for services and supports is exhausting. What causes families stress is not the disability itself, it’s our society’s inability to support that disability. And that stress can indeed be disastrous to a family.
There is some limited help, though. For more than 25 years, Colorado has offered a Family Support Program for families who are caring for people with intellectual and developmental disabilities in their homes. Often, the eligible family member is a child, but people of any age can participate in the program. Through Family Support, families can access funding to pay for extra supports. This might include special equipment, therapies that are not covered by insurance, parent educational opportunities, home modifications or respite care.
Though the funding is minimal, it can relieve some of the financial pressures families face. In addition to the funding, families can also access resources and referrals to other providers and connections to other families of people with intellectual or developmental disabilities.
In Southwest Colorado, the Family Support Program is managed by Community Connections. All it takes is a phone call to learn more about the program and see if you and your family might qualify. Visit us at communityconnectionsco.org or call 259-2464.
Tara Kiene is president/CEO of Community Connections Inc.