Between moments of frustration at the constant delays in getting Lauren’s home completed, I live in a state of barely suppressed glee. I’m incredibly thankful for the opportunity for Lauren to get her own home and excited about what the future could now hold for me without the constant restrictions of caring for a young woman with significant disabilities. Today, I met two people who were a sobering reminder of just what a miracle it is that Lauren will have her own home at the age of twenty-five and a frustrating example of how truly little services and resources have progressed since I became an advocate twenty some years ago.
I drove two hours south early this morning and two plus hours back in torrential rain this afternoon to attend a meeting of the Family Support Coalition of New Jersey. A representative from the state spoke at the meeting about the upcoming changes in how Medicaid will be provided in the future. Two people, parents of a twenty-three year old young woman with significant multiple disabilities, voiced their frustration, sadness, and possibly despair about not only the state of their lives now, but also the view of their future. While discussing the often cumbersome and costly Medicaid requirements for background checks, the mother expressed her concern that the state seemed to be making every effort to protect her child from potential harm from a hired caregiver, “But,” she said, “who protects my child from me?” Her daughter receives a few hours of care a week through Medicaid. They have been offered one weekend a year of respite. The mother is providing non-stop care and wonders that when she is exhausted, frustrated, and in despair – “Who protects my child from me?” I’m sure she is not voicing any intent to harm her child, nor does she want the state to have a say in how she cares for her child, rather, she is voicing her fear about her own limitations. We all have them. But state services neither recognize the limitations, nor the contributions, of families caring for their children with significant and serious care needs.
This couple is also frustrated that while the state seemingly ignores their needs, should they have the opportunity to hire someone to care for their child with Medicaid funds, the state would not rely on their judgment in who they hire, but would require a background check even if they were hiring, say, a cousin that one of them had known for 40 years. They are confused and angry. Who can blame them? On one hand the state is telling them that they are responsible for providing and directing their child’s care, and on the other hand, that they are not.
I become involved in the Coalition seventeen years ago, when we first had legislation in place to support services that would prevent premature out of home placements, to support families in their efforts to care for the varied and exhausting needs of their children with developmental disabilities, and that would encourage the development of services families desperately needed. We’ve worked tirelessly, sat in countless meetings, and been the best advocates we could be, yet still, families are not close to receiving the services that they need.
So, today was a sobering reminder of the work yet left to do. Families would be experiencing less despair, frustration, and fear if they could at least have hope, if they could simply have hope. How much harder is the journey if you don’t know your destination, if there are no signposts or maps to guide your way, if you are making your journey alone? I was reminded today that for most families, that is the journey that they are on. How blessed am I to be frustrated, not because there is no hope, but because the rain has delayed us another day? This I can survive, but I worry how long many other families can survive the cause of their frustration.