I was two years old when Daniel was born. My brother was diagnosed as having cerebral palsy and he was also considered, in the terms of the day, as “profoundly mentally retarded.” His physical and cognitive development would be limited, if it happened at all.
For my parents, the realization of his condition came as the milestones of growth and development—his ability to lift his head, sit up, or crawl—did not happen, or came later than would be expected. Our brother Rodney, even though three years younger, took his first steps before Daniel did. Daniel’s childhood would be different than most kids, and so would his brothers.
The world was very different in the 1960s. There were no special education programs where we lived. There were no community accommodations guaranteed by the Americans with Disabilities Act. For many kids with special needs born in that era, the only option for care offered was a bed in a state hospital facility. My parents chose to raise Daniel at home. And so began my gradual introduction to family caregiving.
My early memories of growing up with Daniel are that it was like an extended “toddlerhood.” He rode in a stroller and slept in a crib. He jabbered but didn’t speak. Small for his age, blessed with a happy disposition and a big smile, he went anywhere we would go. He was spared the seizures, and spastic movements that often accompanied CP. People who didn’t know him might ask about “the baby” even when he was three or four years old. My parents were looking for answers about a diagnosis, or available therapies for his condition, but in my world, he was my brother, and that was that.
As he grew, people no longer mistook him for a baby. Too large for a stroller, my folks found a transport chair for him to ride in. They built a car seat, modified a walker so that he could walk and maintain his balance. A friend with welding skills converted a wheelchair into a cart that allowed Daniel to go with us on family bike rides. Slowly, he mastered feeding himself, toileting and other activities of daily living. The school district expanded access to special needs kids and provided transportation. Eventually, curb cuts, ramps and automatic doors became more common, and the world opened up a little more.
But there were many challenges. Daniel would never be fully independent, and he could not be left alone. Someone always had to be with him. My folks, and once we were old enough, my brother and I, would take turns watching him. Running errands, going to work or school or attending events often meant that someone stayed home. After Rodney and I graduated, and Daniel “aged out” of the school system, the responsibilities for caregiving fell more heavily on my parents. There were few options for attendant care or respite at home. Daniel was no longer a minor, and so my parents became his legal guardians, and also began to plan for his care when they would no longer be able to provide it.
The experience of growing up with Daniel introduced me to the world of family caregiving. The decision to raise him at home was the right one. He is healthier and happier because of it. The rewards of living with him and sharing in the joys of his life are too many to mention. At the same time, caregiving, even in a loving and supportive environment, presents challenges to those providing care. It can create stress and social isolation. It can wreck other relationships or limit career opportunities. The personal, financial and health sacrifices are real.
Family caregivers, the informal providers of support for their loved ones, provide an estimated $480 billion in uncompensated care for their loved ones each year. That’s more than the value of care paid for by Medicare, private insurance, out of pocket costs and charity combined. Beyond the direct care provided, family caregivers are also advocates, interpreters and champions for their loved ones. Successful examples of community-based long-term care have one thing in common – a network of informal supports. But until recently, caregivers have often been an afterthought.
The RAISE Family Caregivers Act, which became law on January 22, 2018, directed the Secretary of Health and Human Services to develop a national family caregiving strategy. In September of this year, the RAISE Family Caregiving Advisory Council released its initial report to Congress, outlining “the challenges faced by family caregivers, federal programs currently available to support them, and provided 26 recommendations for better supporting family caregivers.” Bipartisan in its approach, and reflecting the needs of caregivers from all generations and economic backgrounds, the recommendations from the Council “form the foundation of the National Family Caregiving Strategy, which will include action steps to increase recognition and support for family caregivers.”
One of the realizations found in the RAISE report is that the needs of caregivers are universal and not defined by the health conditions or care needs of their loved ones. My parent’s challenges in meeting the needs of a child with developmental disabilities were similar to those of a spouse caring for their partner with multiple sclerosis, a grandparent raising a grandchild, or an adult child seeking supports for an elderly parent with dementia. Caregivers address the needs of their loved one, regardless of the reasons why care is needed. They face the challenge of balancing their caregiving responsibilities with their other obligations of career and family. Caregiving is not an aging issue. It is not a disabilities issue. It is a family issue.
And speaking of family. . .
My brother Daniel is now in his fifties. And like a lot of middle-aged men, he needs to watch his weight and his cholesterol. He shares a cottage with other adults with disabilities. He is content. Last week I sat in on his care conference with my parents and discussed his health and plans for the coming year. When he was born, kids with his level of disability lived an average of 13 years. Odds are, he will live a normal lifespan, a testimony to the power of family caregivers, and their impact on the health and wellness of those in their care.
For the past 30 years, Benjamin Rose has focused on the needs of family caregivers. Our BRI Care Consultation, WeCare and SHARE programs offer effective supports for caregivers. Best Practice Caregiving helps raise awareness, and utilization of evidence-based family caregiver support programs. Learn more about our programs, and how to access supports on our website.
The RAISE Act provides an opportunity for real, meaningful discussion about the roles of family in caring for older adults and persons with disabilities. Read the National Caregiver Strategy here: https://acl.gov/CaregiverStrategy and provide your feedback on the recommendations.