Tenafly—To mark Jewish Disability Awareness and Inclusion month, nine northern NJ service agencies collaborated to present their second annual conference entitled “The Bigger Picture” for parents and caregivers of those with disabilities. The session took place at the Kaplen JCC on the Palisades this past Sunday. This year’s topics were accessing state resources, various types of financial planning and siblings.
The highlight of the conference was this year’s keynote speaker and award-winning book author Rachel Simon. Simon wrote the 2002 memoir “Riding the Bus With My Sister,” which was adapted into a TV movie starring Rosie O’Donnell and Andie MacDowell. Her presentation was educational, emotional and uplifting. In the years since releasing the book about her sister with intellectual and developmental disabilities, Simon has become an advocate and public speaker for full inclusion, and she’s become an expert on the difficult and, at times, shocking history of institutions for people with disabilities in America.
Dr. John Winer, executive director of J-ADD, one of the lead agencies sponsoring the conference, said, “Hearing Rachel as a speaker made families feel validated and they felt some respite.”
Christine James, assistant division director at the NJ Department of Human Services in the Division of Developmental Disabilities, delivered the introductory remarks. She came as a last-minute replacement for scheduled speaker Elizabeth Shea, who is the assistant commissioner at DHS, who had a family emergency. James went over the details of how the system is run and numerous times reminded the audience they could Google “NJ DDD” to look up the website.
James strongly suggested parents and caretakers begin applying for Supplemental Security Income (SSI) and NJ Care—Special Medicaid once a dependant turns 18, even though the services won’t start until the dependant is 21, because “the intake process takes time,” said James.
James added how much her agency encourages those with intellectual and developmental disabilities to work. If it negatively affects the numbers of how much the disabled can receive from the state, then the agency will “troubleshoot” to help that person earn an income and still receive what public funding they need. James stressed the point that her division can be contacted at any time to help work out problems parents or caretakers have when filling out the forms, and, on an ongoing basis, help get them what they need for the disabled person.
At least nine different workshops were offered after lunch for those in attendance to learn about Medicaid and SSI, the ABLE Act vs. a special needs trust, nos and know-hows of financial planning and investment, financial planning as part of the parents’ life plan, making room for the parent to plan for themselves, and two different sibling sessions for the parent or the adult sibling.
“The financial counseling sessions were really full, some of them had 20-25 in the room,” said Winer. “It’s really a need that a lot of families have.”
The conference also highlighted the needs of siblings of individuals with developmental disabilities. So much effort, energy and attention is devoted to helping children with disabilities, that siblings can sometimes feel left out. Also, siblings may feel themselves thrust into the role of helper and caretaker, and this can be a difficult emotional challenge for them. Support groups are a great therapeutic resource for these siblings, giving them an outlet to express their feelings in a supportive environment.
Winer added the main take-away message from the conference is “there are multiple community agencies providing services, we do work together, the organizations are all working together. We can all learn how to be an inclusive community.”
The nine agencies sponsoring the conference are the Kaplen JCC on the Palisades, J-Add, Ohel NJ, Sinai Schools, Yachad, Jewish Federation of Northern NJ, Jewish Family Service and Children’s Center of Clifton-Passaic, Jewish Family Service of Bergen and North Hudson and Jewish Family Service of North Jersey.
By Allyson Gur-Aryeh and Shoval Gur-Aryeh