When our twins were diagnosed with severe intellectual disabilities and autism at the age of two, we were shocked. However, by the time they were four we were determined to not fall into the trap of many special needs parents…naïveté.
For years I have met parents of special needs children who fail to plan, or understand the support options available, for their child’s future. What often surprises me is that when it comes to their traditionally developing kids, these same parents have been planning for years. A parent who talks college options with his traditional 15 year old waits until two months before the bus stops coming to start planning post secondary life for his unique 22 year old child.
Everyday in America, a disability organization gets a call from a hospital which goes like this: “This is the admitting nurse at the hospital. We have an 80 year old parent lying on the gurney and 50 year old son in the waiting room…and he has no idea what’s happening. If you don’t come get him we’ll need to call the police.” This is every parent’s worst nightmare, yet everyday so many work hard to make it their eventual reality.
Long term residential needs are a complex problem. As the attached article states, 75% of people with disabilities live at home with their parents or another family member. While it is easier for families dealing with lighter challenges to make that wonderful choice, it’s not really a choice for families dealing with more significant needs. The high percentage of folks living at home is not necessarily because that’s what the family or individual want, rather it’s because they have no quality choices available. The great winner in this is not the person or family, but rather the state. Over time, the state has been able to leverage to its advantage the fear which comes from having no choice. Legislators, while bemoaning the size of their health & human services budget, ignore the fact that their support people with disabilities is fractional compared to the trillions of dollars spent by families themselves…families who have neither the strength nor resources to sustain this care.
Modern advocacy has trained us to believe that living with mom and dad until everyone’s dead is “independent living”. This believe is advanced for several reasons…a) parents are understandably concerned about the risk of leaving their child’s care to someone else, b) state services are hard to obtain in many states, c) private pay care is too expensive, particularly for people with greater support needs, and d) the shrinking pool of available caregivers, due to low pay and greater demand for women 18-65 (the primary caregiving demographic), particularly as the aging baby boomers need their own care.
I’ll never forget a meeting of the President’s Committee for People with Intellectual Disabilities (PCPID) in Washington, when a life-long disability bureaucrat made a Powerpoint presentation which included the phrase, “Success will be when family members are willing to open their homes, as well as their hearts, to those with disabilities.” Several of us, including government agency members who themselves have children with disabilities, came completely unglued. To suggest that families who seek independence for their children do not love them is an affront to everyone who has dedicated their lives caring for someone created unique, and been fighting for years on their behalf. Needless to say, bureaucrat left with her ego appropriately deflated by the insight from those who do, versus those who talk.
All that said, when parents of special needs kids choose to keep their adult children at home with them, and are confident in the long-term plan when they are no longer able to provide care…that is truly wonderful. That model, however, may not be the right answer for every person or family. Parents need to put fantasies aside and think through the ramifications and unexpected situations which may arise, and know their options well enough to adjust. I personally would rather be alive and help chart my children’s future with them, than be dead and hope somebody else will do it with the same amount of love as I would. I’m a man of faith, but that’s a faith I do not have.