The demands on caregiver parents are relentless

By Diane Gallagher

The entire nation shuddered at the story of Daequan Norman, the 21-year old man with severe cerebral palsy who was abandoned in a West Philadelphia park by his mother. He was wrapped in a blanket with a Bible in this spring's cold, helpless because he cannot move his arms or legs, and cannot speak.

Stories like Daequan's outrage us, filling us with a sense of disgust, acute sadness, and powerlessness. His mother has been charged with attempted murder and other offenses.

In searching for some meaning in this tragic situation, let's take an unflinching look at the exceptional demands upon parents of children with severe disabilities. Although Daequan is not a student at our school, these are the children and young adults we educate and the families we serve at HMS School for Children with Cerebral Palsy. Many families of children with significant disabilities have very little support, little access to respite care, and little time to find and coordinate the help they so desperately need.

For these parents, there is never a quick trip to the store, a last-minute dinner out, or an unplanned cup of coffee at a friend's home. Their job is 24/7, and its description includes feeding, toileting, advocacy, heavy lifting, dispensing medication, long-term planning, managing intermittent crises, and transportation to therapies and medical appointments.

Worry and uncertainty are these parents' constant companions. Who will take care of their adult child when they become too old to sustain the physicality of caregiving? How is the focus on this child's needs affecting their other children? How can they financially sustain their child's caregiving?

This depth of responsibility and anxiety often leaves parents feeling isolated and exhausted. Yet they are too busy getting through each day to take the steps to access the resources they need.

Every trip out of the house demands intense preparation. Will this place be truly wheelchair accessible? Is there accessible transportation? Do they have a way to blend my child's food so he can swallow it? Are there aspects of the environment that will cause my child anxiety? Will there be an accessible bathroom or changing facilities?

Each accommodation comes with a cost, usually a financial one. Reliable transportation depends upon an adaptive van. Many home-care nurses won't visit a home that doesn't have lifts installed for moving the child. Parents who work must have a full-time caregiver. Occupational therapy, speech therapy (for feeding, as well as communicating), physical therapy, and nursing care are lifelong necessities for people with cerebral palsy to maintain skills and abilities.

The government absorbs some of these costs for children until age 21. Yet even these entitlements do not come close to covering the full cost of care.

The age of 21 - Daequan's age - is a critical juncture for families. At 21, a child ages out of the education system. Many social services disappear. There is a new set of rules to learn and navigate, with very little assistance to do so, unless those families are connected to schools or community supports to guide them.

Take a moment to put yourself in these parents' shoes. Consider the physical, mental, and emotional toll of taking care of a child with complex needs. If just one positive thing can come from the devastating story of Daequan Norman, perhaps it is that we must recognize the extraordinary expectations of parents of children with severe disabilities. We must find a way to provide them with the physical, emotional, and financial supports necessary to sustain their own and their children's mental and physical health.