What are your plans for your special needs child once he or she leaves the public school system at age 21? Were you thinking of getting a placement for your child in a group home? If so, you may want to reevaluate your options. New York State does not anticipate building more group homes for the foreseeable future. So what is the trend for New York?
Let’s first take a look at what is causing New York to abandon new community residences. Group homes and the vast majority of other adult services for the disabled are funded by Medicaid. The costs of Medicaid, combined with state pensions and other unfunded liabilities, are growing at unsustainable rates. As a result, Medicaid is going to be faced with continued fiscal attacks. Group homes, with their high annual operational costs were, not surprisingly, among the first casualties.
The Office for People with Developmental Disabilities (OPWDD) is the state agency which oversees the funding for services for people with mental retardation and developmental disabilities. New York State, through OPWDD, is currently changing the way services are provided under the People First Waiver. As a result, housing is currently trending in two directions.
One direction is independent living with support. This avenue is appropriate for those individuals who are relatively high functioning and can live independently with minimal support services. The key will be to locate housing for people with disabilities which is also close enough in proximity to make support services cost-effective. This will be a challenge on Long Island and upstate New York.
The second path is for the disabled individual to continue to live at home. While this option is attractive to some, it lacks many of the attributes to be found in group homes such as socialization with one’s peers. Living at home also fails to address the inevitable crisis which occurs upon the death or disability of the last remaining parent.
Are there other alternatives? Foster care- type homes is one option. Some states such as Vermont already employ this type of housing option where people are trained and paid to care for disabled individuals in their homes. OPWDD also operates a similar program on a much smaller scale.
Another alternative may be for parents to band together and create group homes themselves. Since Medicaid funding is not going to increase in terms of real dollars, New York State is going to have to find a way to alleviate some of the obstacles parents face when attempting to establish a new group home. New York State will likely need to make changes to current mandates for group homes if they are to be affordable to more families.
More than ever, it will be imperative for parents to network with agencies and other service organizations in order to provide the kind of life they want for their special needs child. They will also need to begin planning earlier to take advantage of opportunities which become available over time. I will address networking and planning in future blogs.