Coordinated Care — a local program intended to provide- for the future of special needs adults when their parents are no longer able to — will receive nationwide exposure next month when the Association of Jewish Family and Children’s Agencies holds its annual convention in San Jose, Calif., April 30 to May 2.

The 10-year-old program is a partnership between the Jewish Family Service of MetroWest and the Jewish Community Foundation of MetroWest New Jersey, both partner agencies of United Jewish Communities of MetroWest New Jersey. Coordinated Care is financed by trust funds set up through the foundation.

-To JFS executive director Reuben Rotman — who will cohost a convention panel on coordinated care with Leah Kaufman, director of the transitions eldercare service at the JFS, and Stacy Sulman, foundation assistant director — the gathering will provide a venue for sharing a local success story with 144 other family-oriented social work agencies serving Jewish communities in the United States and Canada.

The key to the program, said Rotman, is to provide not only for a special needs individual’s financial future, but to serve as their advocates as well.

“Let’s say the person goes to the opening game of the baseball season every year and that’s really important, but one year the institution where he or she is living forgets,” said the JFS executive. “The role of Coordinated Care is to make sure that everything — as mundane as going to opening day and as important as making sure they get the right medication and get to work on time — are taken care of, things that may not happen if an advocate isn’t there to prod the facility.”

“We pick up where the parents leave off,” agreed Kaufman. “We become like a surrogate family member.” A JFS case manager would represent the adult child at a variety of planned care meetings and advocate for an adult child unable to represent him or herself.

“We also ask the parents to assign what we call a ‘special friend’ — someone in or close to the family who is usually considerably younger than the parents,” Kaufman explained. “That special friend would take part in any institutional meetings relating to the adult child.”
Kaufman and Sulman, an attorney, conduct joint intake interviews with family members before establishing individualized care programs. The programs are established and reviewed periodically by parents and case managers.

“Once they sign on to the program, we meet with the parents to develop an extensive, detailed care plan, reviewing past experiences, medical needs, financial situation, living situation, the activities the adult child is involved in, and what the parents wish for that child in the future,” said Kaufman. “That guides the agency in advocating for the adult child. In essence, it is taking over the parents’ job in overseeing all aspects of the adult child’s care.”

Depending upon the actuarial assessment of the adult child’s medical needs and life expectancy, the cost generally runs several hundred thousand dollars and is typically financed by a parent’s estate or life insurance. The trust funds are designed to avoid compromising any disability entitlements that the individual may receive from the government.

“The JCF provides legal and technical assistance for the management of these cases, with a special board set up to oversee the trusts,” said Sulman. “Many families set up special-needs trusts with a bank to cover an adult child’s future expenses. This is why families need coordinated care, which works with the bank to determine and pay for the best services available.”

Added Rotman: “The special-needs trust pays for daily living expenses, and that’s absolutely essential, but the families forget about the coordinated care their adult children will need in the future.”

One challenge of the program is convincing families of the need to plan for a future they often would rather avoid thinking about. Currently, only 18 families have signed up for the Coordinated Care program, and all three of its administrators are looking for more recruits.
“Families need to explore this service and think about whether they feel comfortable doing this,” said Rotman. “It has taken us 10 years to get 18 families enrolled because they are confronting their own mortality.”