Opening Doors – For These Families, Season of Waiting Has Personal Meaning

In the Christian tradition, the weeks preceding the celebration of Christmas are a period of anticipation and of waiting, to commemorate those years in which the Jewish people awaited the Messiah.
The Christmas story recounts the journey of two young people, looking forward to the birth of a child but forced to travel to their own birthplace to fulfill the obligation of a government census. Because “there was no room in the inn” for these travelers, they frantically sought and finally found temporary shelter for their newborn child.
Two years ago, this column drew attention to the fact that across America there are many families for whom the plight of the parents in this story has a very personal, emotional identification.
Their sons or daughters are on a state waiting list for crucial residential services. They worry that these loved ones with developmental disabilities (including mental retardation, cerebral palsy, epilepsy, spina bifida, autism or neurological impairment) will have no place to live, with the support services needed, when they are no longer able to care for them.
The great majority of these anxious parents are aging, live-in caregivers, an estimated 2.9 million of whom na-tionwide are 55 years or older.
In 1998 the NJ Department of Human Services published its “Plan to End the Waiting List by 2008.” At that time, the statewide waiting list for the residential services these families so desperately need numbered over 5,100 individuals.
Twelve years later, this waiting list, far from diminishing in number, has grown to almost 8,200 (an increase of over 60 percent), more than half of whom are labeled priority cases in urgent need of services.
According to a Robert Wood Johnson report compiled in May of this year, the number of developmentally disabled individuals living at home with their families in our state significantly exceeds the nationwide average of 57.4 percent for individuals who live in the family home.
While we are all fully aware of the current fiscal crisis New Jersey faces, the expanding residential waiting list presents an urgent personal crisis for these families. Many didn’t expect their children with serious developmental problems to outlive them.
The caregiving they have willingly and selflessly provided has, it should be noted, been unpaid labor that has been of enormous economic benefit to the state. Now they are troubled that there is no place for these grown children to go even in times of temporary crisis.
Families whose loved ones are on the waiting list need more than a glimmer of hope; for many, time is running short. They need to be assured that the caregiving services they provided at no cost for many years will continue when they are no longer able to fill that role.
Justice and compassion demand that the State of New Jersey, despite the recent budget crisis, follow through on its own 2007 Olmstead Plan to serve people with disabilities in community settings.
In the meantime, in the spirit of this season of eternal hope and good will toward all:
Bless those who open doors with grace and love and knowledge, assuring that all people may partici-pate in our community.
Bless those who feel excluded — Give them the knowledge and conviction that all are welcome in our community.
Finally, let all our hearts be open to flinging wide the doors that separate us from one another.
Pierson is Coordinator of the Cape May County Office of Disability Services