Nicole Rubin and her parents play a game of
Scrabble. The Rubins, like so many other
parents, dread the thought of what will happen
after age 26 comes for their daughter.
parents are so exhausted from the daily
"fight" of taking care of their children
that they just "fade away" instead of
becoming politically active.
The waiting list scenario doesn't ex-
clude the organized Jewish community.
Jewish Vocational Service's adult day
services have a waiting list of 104 with
only about nine or 10 slots opening each
year. JVS day services perform sub-
contracted assembly piecework and
janitorial work.
Shirlee Wyman-Harris, family assistance
coordinator for the Jewish Association for
Residential Care for Persons with Devel-
opmental Disabilities (JARC), said that
there is a real gap between what the
public school system has to offer and what
is out in the world after age 26.
NEED FOR POLITICS
"As a parent, you don't want to wait un-
til age 26 to begin thinking about all of
this," Ms. Wyman-Harris said. "Parents
learn that time flies, and pretty soon that
little child they had becomes a teenager,
and then soon after that they are adults."
JARC, according to Ms. Wyman-Harris,
is also frustrated by the lack of public
funds available for day programs and
residential programs. And like the public
programs, JARC also has a waiting list.
Like Mr. Fontichiaro, Ms. Wyman-
Harris suggests that parents need to
know what is happening politically, and
they need to be advocating for the rights
of their children.
"You just can't give this lip service,"
she said. "Parents have to be informed con-
sumers. They have to plan their children's
future within the mental health frame-
work. They may also have to plan more
creatively than in the past because of
budget constraints."
JARC recently hosted Phyllis Kramer,
the founder and president of a Boston and
Troy-based financial planning organiza-
tion that specializes in planning for the
financial needs of the disabled.
Ms. Kramer was straight-forward when
she talked about parents' future obliga-
tions. She said that often Jewish parents
spend more time planning a bar mitzvah
or wedding of an able-bodied child or even
a vacation to Europe than in planning the
financial future of dependent children.
"Boy, are they going to be surprised,"
she said. "This is a matter of emancipa-
tion. We spend thousands of dollars on
sending our children to the best colleges
so that they can be emancipated from us
and make it in this world. But if we have
developmentally disabled children, we
don't plan. We just hope the government
is there to rescue us."
Ms. Kramer's organization, Secur-
Planning Associates, stresses trust-
eeships and guardianships as well as
long-range financial planning. She makes
her clients think of alternative plans,
such as co-operative living arrangements
in private group homes.
But, meanwhile, the Sterns, Rubins and
Kopelmans can name families they know
who have no place to send their over-26-
year-old children.
"You make the most of your life, and
you worry that Ellen is just going to end
up in front of the television set," Mr.
Stern said.
"When your friends' children have a bat
mitzvah, you cry a little, because you
know there's Ellen in her wheelchair,"
Mrs. Stern said. "And when everyone is
having their Sweet 16, there's Ellen in
her wheelchair. And I can remember all
of these same girls at their graduations,
all in their pretty white gowns. And
there's Ellen in her wheelchair.
"What's going to be for Ellen?" ❑
•IIN/sas
THE DETROIT JEWISH NEWS
31