I have had the privilege to know so many extraordinary people with developmental disabilities and their families in MetroWest, many of whom are in need of supervised, supportive, community-based residential services (group home and supervised/supportive apartments). While JSDD currently has the capacity to serve forty-three people residentially and there are many other agencies providing similar services, there are thousands of people in the State of NJ waiting for these services. Recent changes in reimbursement for these services have resulted in considerable challenges for agencies providing these services.
As service providers, we receive daily inquiries from families in search of assistance and support for their adult children, siblings, nieces and nephews, some believing that a simple phone call to an agency that provides the service will answer their needs. Often, family members are surprised that it is the first of many in a series of calls and a long process that can be, at times, frustrating.
Now the good news… Parents have begun educating themselves while their children are still in elementary school and many have demonstrated themselves to be effective and 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 so encouraging, gratifying and inspirational. Parents, today, have an expectation more in line with that of their children without special needs. They expect that their child will find something meaningful to do with their days and will have a home he/she can call their own and for which they can be responsible similar to their siblings. Parents and siblings expect to spend time with their family member in supportive living on holidays, special occasions or make appointments to have dinner out, 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 spent working, time spent with friends, involvement in the community and following their hearts and minds to pursue interests and hobbies and continued learning towards personal growth.
Accomplishing this and overcoming obstacles, not the least of which includes funding, is the challenge for all of us. How do we continue to grow necessary supports services in the current fiscal reality within which we live? Creative solutions exist and many involve the financial contribution of families, not previously an option.
The individualized service budget model which has been rolled out to individuals as they turn 21 allows for contribution to care. The budget assigned to the individual can be utilized for the supports one needs 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, in home supports.
The individual nature of the budget is designed to allow for enhancement as needs change. This could include a supportive living environment and the process leaves room for the possibility that resources towards 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 savings vehicle of choice, setting up a special needs trust fund or an ABLE Account with appropriations from your family budget similar to college savings may be a means of supplementing an assigned service budget.
Finding creative solutions to the question of limited funding resources are all of 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 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, log on to www.arcnj.org.
To contact Linda Press, Executive Director of Jewish Service for the Developmentally Disabled (JSDD) of MetroWest, call (973) 272-7141 or firstname.lastname@example.org.
Greater 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 email@example.com, or visit www.greatermetrowestable.org.
Linda Press is executive director of the Jewish Service for the Developmentally Disabled of MetroWest. Contact her at 973-272-7141 or firstname.lastname@example.org.