Jewish Family Service of North Jersey and the Jewish Association for Developmental Disabilities often collaborate on programs to benefit the community. It was only natural, then, that when a need was identified that directly impacted community families, the agencies decided that sharing their resources would allow them to better assist these families. The result was an upcoming program dedicated to educating parents about how best to prepare for the future of their special needs child.
According to Stephanie Shapiro, J-ADD Community Liaison, “We needed to help families formulate a plan for what may be lacking. They must prepare in advance for the future of their special needs child.”
Added Leah Kaufman, executive director of JFS of North Jersey, “We want to help parents begin to think about making plans for the future of their child. Who will care for them when the parents are no longer able? It is never too early to start.”
What these agencies hope to avoid is the “emergency placement” situation—when the unthinkable arises and no plans have been made previously, the issue becomes where the child should be placed. Of course his or her basic needs will be provided for, but the parents will have no control over the specifics. That is a frightening reality for many parents to face.
Enter the “life care plan” which is precisely what the name implies—a plan for the care of the child for the remainder of his or her life. It allows parents some peace of mind when thinking about their child’s life after they are gone. They can be assured that someone will know their child—his or her likes, dislikes, physicians, birthday celebrations, vacation preferences, favorite color, food preferences, daily routine and more—ensuring that the child’s life will maintain as much stability as possible. This “plan” also helps the parents plan financially for the long term, so that their child will have his or her needs met in the future.
This “life care plan” differs from other types of planning because, often, “families have ideas or suggestions about what to do, but that’s all they are—ideas or suggestions. Here, the goal is for a concrete action plan to be in place so that families have peace of mind and future caregivers know exactly what to do and how to do it,” explained Dr. John Winer, executive director of J-ADD.
Continued Winer, “Hopefully, the individuals with disabilities will ultimately benefit from this, but today our goal is to ease the minds of the parents. To assure them that they have appropriately prepared for the future and that their child will be cared for properly.”
This collaborative program will be offered in several locations on multiple dates, with Part One being offered on Wednesday, November 11, at 7:30pm at the Fair Lawn Jewish Center, and again on Wednesday, November 18, at 7:30pm at the Wayne YMCA. Part Two will be offered on December 16 at the Paramus Jewish Center. These presentations will feature financial planners, financial planning attorneys, social workers and others who will speak about navigating through the maze of services available to families of special needs children, funding a supplemental needs trust, guardianship, power of attorney, coping with the emotional impact on families and more.
The hope is that families will gather information and then reach out to the agencies for assistance and/or referrals in order to put their specific “life care plan” into place. Many programs and services have waiting lists or waiting periods and the agency social workers can help begin the process sooner rather than later.
“It is hard to think about this, not being there for your child,” said Shapiro, “but this gives families the most control possible over this situation.”
Perhaps most importantly, said Winer, these programs are intended to show families that “they are not alone. Some may come back for the information, but others will return for the informal support from families in similar situations.”
This program is appropriate for families of children with any cognitive, physical, emotional or psychiatric impairment. Admission is free, but registration is required.
For more information and registration, please contact [email protected].
The Fair Lawn Jewish Center is located at 10-10 Norma Avenue in Fair Lawn. The Wayne YMCA is located at 1 Pike Drive in Wayne. The Paramus Jewish Center is located at 304 Midland Avenue in Paramus.
By Jill Kirsch
