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What comes next?

J-ADD/JFS program ensures that parents of the disabled know all their options

Although J-ADD and JFS of North Jersey have offered services to families of children with special needs for a long time, their recent collaboration takes a decidedly new approach to the issue.

Planning For Your Special Needs Child: A Life Care Plan — a series of programs targeted to families of children with cognitive, physical, emotional, or psychiatric impairments — recognizes that a child’s life is multifaceted, embracing not only medical issues but the issue, say, of how children customarily celebrate their birthdays.

With this in mind — and to ensure that people with special needs will remain well served even when their parents no longer are able to monitor their care — the two organizations have created a detailed list of all those eventualities for which parents must provide. Using this list, parents will be able to create a Life Care Plan for their children.

As part of the program, J-ADD/JFS presentations, led by a panel of experts, will focus on such issues as “advocating and navigating through the maze of services; funding a supplemental needs trust; guardianship; power of attorney; coping with the emotional impact on the family; and making sure your child is taken care of after you are no longer able to [do it],” according to program publicity.

The free programs will take place in several communities. While the Fair Lawn segment of Part I will have taken place before this issue goes to press, the same program will be offered at the Wayne Y on November 18. Part II will take place at the Paramus Jewish Center on December 16.

Leah Kaufman, the executive director of JFS of North Jersey, who was involved with a similar program in another community, said, “there’s a great need for families with special needs children — whether with developmental or physical disabilities or chronic mental illness — to lay down in great detail what parents hope for the future of their child. When parents are no longer around or able to do hands-on caregiving, someone can step in and do what the parents wanted, to try to maintain normalcy.”

Because a prime question is how parents will be able to fund the type of care they envision, the first educational program will deal with legal aspects of the issue — how to make sure that all the legal papers are in order and examining issues surrounding guardianship, power of attorney, and setting up a supplemental needs trust. Part II will focus more specifically on ways to fund the care.

“We felt no one was filling the gap in our community,” Ms. Kaufman said. “Families are struggling, especially those with adult children. They worry what will happen. The child will need services, someone to monitor their care, make sure doctor’s appointments are kept, down to how they spend their birthdays.” She said that she had worked with a family whose special needs child always spent birthdays at a baseball game. Life plans, she said, go into great detail: What kinds of vacations do the children go on? If they go at all, do they go to weekly religious services?

Both JFS of North Jersey and J-ADD (at greater length, the organization’s name is the Jewish Association for Developmental Disabilities) can provide emotional support, case management services, and help with filling out the detailed life care plan they have created, Ms. Kaufman said. The program has received a one-year grant from the Federation of Northern New Jersey. She noted that she and Jon Winer, J-ADD’s executive director, “worked through the Berrie professional track together.”

The Berrie Fellowship Leaders Program nourishes and trains up-and-coming leaders throughout its catchment area; it primarily works with volunteers but recently added a track for professionals as well.

“I approached him when the program was over and said let’s submit a joint grant proposal to federation,” she continued. Happily, the request bore fruit.

Ms. Kaufman hopes the classes will start families thinking about the issues involved in the future care of their children. Then, when they have had some time to digest the issues involved, “they will reach out to our individual agencies for help in putting the life care plan together. They will need assistance. Our social workers can guide them and help them focus.”

Dr. Winer said that a lot of what the agency is doing has been prompted by a change in funding to families and agencies, “moving from contract-based [services] to fee for service. Rather than agencies receiving a lump-sum grant in the beginning of the year, families or individuals receive a service and the organization bills Medicaid for it.

“Some families are frantic about what is going to happen, wondering ‘who will take care of my child when I can’t?’” he said. “Will agencies have the money? The other piece is that the role of the professional is changing greatly in terms of working with an individual with intellectual and developmental disabilities.” The change, he said, is that professionals are working alongside their clients — not necessarily “curing” them — but living with them in the community.

“The people we serve are no longer so separate from the community,” Dr. Winer said, noting recent statements holding that since “all Jews got the Torah at Sinai, not just those Jews without disabilities, we really need to work toward having people integrated into the community.

“While we’re great at providing institutional types of service, we’ve been less successful at the communal level,” he said. After a conversation with Ms. Kaufman, “we realized that if we shared our resources, we could help families develop additional resources.” Under this new arrangement, both J-ADD and JFS provide social workers “who will work together as a team to develop an educational program for families and find resources in the community to share with those families.”

After they have gone to the educational sessions the agencies offer, Dr. Winer said, the parents will be better able to develop a plan of care, creating a blueprint for “how to keep looking after the individual in the community… today, tomorrow, and in the more distant future.

“What kind of trust do they need to set up for a family member with a disability? How do they do it? Do they understand the implications of future financial planning for their child?”

The idea, he said, is to educate families on why it’s important for their children to live in community rather than in a more institutional setting.

“I’m not arguing about care,” he said. “If you don’t have a good plan, an institution may be as good or better, but quality of life is dependent on feeling like you belong, that you’re part of a larger whole.” Acknowledging his personal “soap box,” Dr. Winer said that as Jews, “we have no right to advocate for any form of segregation. By putting individuals in institutions, we segregate them.”

His goal, he said, it to move the concept “from the medical model to the social model of disability.” All people “share the same types of issues, aside from specific disorders,” he said. The organization has been working to create “non-traditional” housing arrangements for people with special needs, such as two-person apartments, in addition to the more common group homes, he continued. He hopes families will be encouraged to look at various alternatives available in the community to find the best possible care. If these do not exist, he said, “They will have to be developed.”

Response to their initial publicity has gotten a good response, Ms. Kaufman said, and some two dozen people have signed up for the first program. “And I suspect we will have walk-ins,” she added. “There’s a need for it. It gives parents peace of mind.”

Another benefit of publicizing the upcoming programs is that professionals have stepped forward, offering to provide pro bono services in helping families set up special needs trusts. Ms. Kaufman and Dr. Winer are hopeful that more volunteer professionals will come forward to join then.

“We’re both very excited about this,” Ms. Kaufman said. “We think it can help a lot.”

For more information and to register for the classes, contact :

Jewish Family Service of North Jersey, One Pike Drive, Wayne (973-595-0111) or  17-10 River Road, Fair Lawn (201-796-5151), info@jfsnorthjersey.org or The Jewish Association for Developmental Disabilities, 190 Moore St, Suite 272, Hackensack (201-457-0058),www.j-add.org, sshapiro@j-add.org.

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