“ I regret to inform you that there has been a decrease in the reimbursement rate for Medicaid Personal Care Assistant Services as a result of the State of New Jersey’s 2011 Budget.”
This is the first line of a letter that went out to many individuals and families last week. I’m sure many other states are sending out similar letters regarding cuts to services affecting those with developmental disabilities. Here in New Jersey, we have been fortunate not to have experienced many cuts to services and have even had increases in some areas. Thankful that we are, the large majority of families are still struggling to care for family members with disabilities with little or no services. The number of individuals that need services increases every year yet services are remaining basically stagnant. I run into family after family who are desperate to find the care that will enable them to continue to care for their child at home, or who can no longer be the primary caregivers for their children. What can a family do when there are no options, no services to access, no hope that there ever will be? They feel that no one really understands or cares.
The public cares about many things. A Google search on "Lindsey Lohan" has 37,700,000 results. A Google search on "Lebron James" has 20,300,000 results. A Google search of "individuals with developmental disabilities" has 4,000,000 results. Why do two immature, arrogant individuals garner the interest of 58,000,000 people yet the thousands with development disabilities interest so dramatically fewer? I could speculate about the commercialization and celebritization (yes, that is actually a word…I checked.) in our society today. I could complain about government policies and politicians being out of touch. But, you know all about that. And, if you’re the parent of an individual with developmental disabilities what you know most of all, is that the future is a really, really scary place.
This week in New Jersey, individuals with developmental disabilities and their families, who depend on Personal Care Assistant Services, learned that they must struggle even harder to live lives already teetering on the edge of impossibility. What can I tell families who reach out for some shred of hope – “take it day by day’? I think not. Not when each day brings them closer to doom.