I have had the privilege to know many extraordinary people with developmental disabilities and their families in MetroWest, many them in need of supervised, supportive, community-based residential services (group home and supervised/supportive apartments). While Jewish Service for the Developmentally Disabled has the capacity to serve 40 people residentially and many other agencies provide similar services, conservative estimates suggest that there are more than 8,000 people on the state’s waiting list in need of such services. New initiatives to address the wait in recent years barely scratch the surface, and more are added to the list each year than are placed. Government funding for supportive living arrangements has historically been relatively safe from actual funding cuts. There have been no cost-of-living increases for several years; however, increases associated with operational realities feel like budget cuts.
As service providers, we receive daily inquiries from families in search of support for their adult children, siblings, and other family members; some believe that a simple phone call to an agency providing services will answer their needs. Often, family members are surprised that that call is the first of many in a long process that can be frustrating.
Now the good news: Many parents who have begun educating themselves while their children are still in elementary school have become powerful advocates when armed with information and high expectations. The shift in expectations for families who have children graduating from school placement at 21 has been gratifying and inspirational. Parents expect that their special-needs children will find something meaningful to do with their days and will have a home they can call their own and for which they can be responsible — similar to expectations they have for their children without special needs. Parents and siblings expect to spend time with family members in supportive living on holidays and special occasions or to have dinner out with them, but a full, busy schedule of quality life experiences and relationships of their own is the goal.
Life for adults with developmental disabilities should be like yours and mine — engagement in an active life, working, time with friends, involvement in the community, and following their hearts and minds to pursue interests and learning toward personal growth.
Accomplishing this and overcoming obstacles — not the least of which is funding — is the challenge for all of us. How do we continue to grow necessary support services in today’s fiscal reality? Creative solutions exist, and many involve the financial contributions of families, not previously an option.
The “self-directed” service budget model that has been rolled out to individuals as they turn 21 allows for contribution to care. The budget assigned to the individual can be used for the support needed to engage in community-based activities — day program or supported work, the learning of a skill, transportation, fitness and cultural activities, and, for some with more significant support needs, home support.
The individualized budget allows for enhancement as needs change. This could include a supportive living environment, and the process leaves room for the possibility that resources toward the financing of additional support needs can be supplemented from other sources without compromising the budget. This, in theory, and more often now in practice, leads to greater flexibility, opportunity, and individualization than in the past.
The lesson for families of young children thinking about the future is the same as if a family were saving for college. While a 529 savings plan may not be the vehicle of choice, setting up a special needs trust fund with appropriations from your family budget similar to college savings may be a means of supplementing an assigned “self-directed” service budget.
Finding creative solutions to the question of limited funding resources is all our responsibility. New Jersey is beginning to consider new models. Allowing families who are able to participate in the cost of care, while still awarding individual, self-directed service budgets to the service recipient, is one way to stretch existing resources. Combining the income potential of the individual as a partner in supporting living expenses is becoming more prevalent as well.
While there is no solution to the residential waiting list crisis currently, there are glimmers of hope that the system is attempting to achieve greater flexibility and individualized alternatives. Your support can make a difference. For more information on advocacy and contacting your legislators to have your voice heard, visit arcnj.org.
MetroWest ABLE (Access, Belonging, and Life Enrichment for People and Families with Special Needs) is the community’s network of agencies and community leaders that serve and advocate for individuals with special needs and their families. MetroWest ABLE is funded by the UJA Campaign, the Linda Bunis Haller Foundation, and the Healthcare Foundation of New Jersey. For more information, contact community coordinator Rebecca Wanatick at 973-929-3129 or firstname.lastname@example.org, or visit metrowestable.org.