Wednesday, May 6, 2009

When parents are caregivers

I've had a really hard time finding statistics on how many children with disabilities are living at home being cared for my their parents. At the time the Developmental Disabilities Assistance and Bill of Rights Act was passed in October of 2000, the federal government found that 88% of individuals with developmental disabilities lived with their family or in their own homes. Since the government figures showed a national population of individuals with developmental disabilities somewhere between 3.2 and 4.3 million, that 88% equals at least 2.8 million adults and children with developmental disabilities. The feds identified at least 479,462 adults with developmental disabilities who were living with parents aged sixty or older. More recently, according to the Child and Adolescent Health Measurement Initiative. 2005/06 National Survey of Children with Special Health Care Needs, Data Resource Center for Child and Adolescent Health website, at that point in time there were 10,221,439 children between 0 and 17 with special health care needs. Of these, 94.8 percent live with their parents. Since the statistics for 2005 are broken down by the size of the family, those 9,689,924 children were cared for by 15,678,331 parents. In total, we're talking a population of the United States equal to over 25 million citizens represented by children with special health care needs and the parents who are taking care of them. For some reason that I have yet to understand, this enormous minority population isn't included when people start talking about "caregivers." I've found three membership groups online for caregivers -- the National Family Caregivers Association, the Family Caregiver Alliance, and the National Alliance for Caregiving -- NONE of which even seems to recognize the existence and needs of these 25 million citizens. And by not recognizing the needs, they are also not educating families about the solutions, EPSDT in particular. I kind of understand it. If someone called me on the phone for a survey and asked me if I was a caregiver, I'd say no. I'm a mom. But all us moms and dads out there caring for our children with special health care needs need the lobbying, legislative, judicial and civil rights support that other caregivers are receiving. Just because we're parents taking care of our kids doesn't mean we aren't suffering from the same increased stress, depression and anxiety, with lowered immune system and a shortened lifespan as has been found typical of adult children caregiving for their parents. And many of you will probably agree with me that the additional grief of a parent coming to terms with their child's special health needs, and for some, the constant struggle between life and death of our children, serve to intensify horribly the levels of stress, depression and anxiety. We need help. Our children need their rights protected. The Administration and Congress need to pay us attention.

1 comment:

  1. I suppose some might answer that parents are not included as parents are expected to care for their children. Of course, this would falsely underestimate the time, money, and stress involved in caregiving for a child with special needs. It also excludes caregivers for adult children and the entire category of grandparents who provide necessary services.

    This leads to severe underestimation (and therefore severe underfunding) of the physical, emotional and financial supports that parent/grandparent caregivers require in order to provide home and community care.

    Unfortunately, the people who most need to organize and speak out about this untenable situation are the exhausted, heartbroken, financially shakey parents who barely have time to sleep, let alone take on the state and federal government.


About Me

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I'm the mom of a child with disabilities. Hannah's first neurologist said she might never develop beyond the level of a 2 month old infant, and there wasn't anything I could do about it. The brain damage was just too severe. Nine years later, she walks, uses a touchscreen computer and I've just been shown she can learn to construct sentences and do simple math with the right piece of technology. Along the way, I discovered I needed to teach myself what Hannah's rights to services really were. Learning about early intervention services led to reading about IDEA and then to EPSDT. I've been waiting for the Obama administration to realize the power and potential of EPSDT for the medical rights - including the right to stay at home with their families - of children with disabilities. The health reform people talk about long term care, and the disability people talk about education and employment, but nobody is talking about EPSDT. So I am.