I write in response to a story in BINJE called, ‘The final word: Sellers details challenges, frustrations of group home providers.’ I want to thank you for taking time to talk to Sellers, the outgoing CEO of the New Jersey Association of Community Providers; it is not often that a media outlet devotes that much space to issues facing the developmentally disabled population. My son has lived a long and successful life in a N.J.-based group home and I am concerned about proposed cuts to Medicaid being considered by the U.S. Congress that will endanger the lives of some of the most vulnerable in our country, as well as increase the economic burdens on taxpayers.
By describing my experience, I hope to facilitate a better understanding of the danger of these proposed cuts. My experience is not unique, and there are thousands of families across this country with similar stories.
My 33-year-old son, Ross, has profound autism. He is nonverbal, needs help with activities of daily living, has a seizure disorder and exhibits unpredictable episodes of self-injurious behavior and aggression. Despite these disabilities, Ross has been living the best life he can at Bancroft, a nonprofit headquartered in Cherry Hill, that provides a continuum of services across the lifespan to children and adults with autism, developmental and intellectual disabilities, and traumatic brain injury.
The services Bancroft provides to Ross are funded by New Jersey Medicaid, through the New Jersey Division of Developmental Disabilities.
Ross has lived more than half his life at Bancroft. He entered through the Lindens Center for Autism, then moved to group homes in the community and graduated from the Bancroft School in 2013. Ross currently lives in a Bancroft adult group home with three peers, staffed 24 hours a day. He attends Bancroft’s day program at the Jacob Schaefer Center in Cherry Hill. Bancroft provides Ross with continuing functional learning and community activities. Bancroft also provides vocational training and employment supports to those who are capable.
Despite his disabilities, Ross has a “life,” thanks to Bancroft. He eats home-cooked meals in his group home, engages in activities in the community and loves listening to music. Ross has a sense of humor. While his challenging behaviors have lessened over the past 20 years, they continue to be unpredictable, requiring intervention and redirection by dedicated Bancroft staff.
The reality is that although Ross has made significant progress, he will never be able to live on his own. If Bancroft is forced to scale-back its services due to Medicaid cuts, there is no safe environment for Ross. As my husband and I age into our 70s and deal with our own health issues, this possibility creates a real fear. There are thousands of families like mine who share this fear.
Bancroft has approximately 3,000 employees, who provide services to 2,000 individuals. Each year, Bancroft’s children’s program receives over 1,000 inquiries, and its adult program fields almost 800 inquiries. In addition to recognizing the disastrous impact Medicaid cuts would have on those individuals currently receiving Bancroft’s services, we need to think about the effect on those who are still waiting to receive them.
Bancroft receives 88% of its funding from New Jersey Medicaid. The State of N.J. currently receives 50% of its Medicaid dollars from the federal government. If Congress decreases Medicaid funding, by either cutting the Medicaid expansion or reducing the percentage of Medicaid funding New Jersey receives, Bancroft will no longer be able to provide the services it does today. What will happen to the children and adults currently served by Bancroft if that happens?
Caregivers and parents age and die. Often other family members are ill-equipped or otherwise unable to care for a family member with autism and the significant challenges that accompany that diagnosis.
Will people like my son Ross be put out on the street? Will he become homeless? Will he be shot or wounded by law enforcement personnel who don’t recognize or understand his unusual behaviors or recognize that he cannot speak?
In this scenario, Ross would probably be sent to a hospital, where he would receive medication and be released (to whom and where, I do not know). The lack of continuing and specialized care will result in more physical and psychological distress for Ross, and trips to the emergency room will become a revolving door.
These emergency room visits and hospital stays would be expensive and recurring, since hospital staff typically don’t have the time or expertise to work with autistic and developmentally disabled children and adults. Will New Jersey taxpayers be required to pick up the tab? If not, who will? And won’t that tab continue to increase dramatically over time if providers like Bancroft are forced to curtail their services?
Cutting Medicaid funding is not a Democratic or Republican issue. Autism and other developmental disabilities affect children and adults of all races and ethnicities. How we treat these disabled individuals is a reflection of what we value as a country and our humanity.
Laura Kuntz is a member of the Board of Trustees of Bancroft, a nonprofit headquartered in Cherry Hill that provides services to children and adults with autism, developmental and intellectual disabilities and traumatic brain injuries.
