Human Services
Commissioner Gwendolyn L. Harris yesterday revealed an
ambitious plan she said will
whittle down a "monolithic" 7,000-person
waiting list for developmentally disabled people in need
of community
housing.
Harris said her plan
will not involve building new housing for the
developmentally disabled. Instead, the state
will shift its mission from
finding people a place to live to providing more services that
will allow
mentally retarded and autistic people
to remain with their families longer.
The plan, however,
will generate some controversy because part of the
funding for the revamped system --
$5 million to $20 million -- will
come from requiring disabled
people living in state-subsidized housing to pay
a bigger portion of their disability checks to cover room
and board. Describing the waiting list
as "monolithic" and "not functional,"
Harris said she hopes to reduce it by
making it easier for the developmentally
disabled to stay at home and
not need state-subsidized housing. Thus,
the state will provide families
with more respite care, equipment to
make homes more accessible and more
employment programs for the
developmentally disabled.
"Families and other
folks have brought to our attention that (housing)
is not the only service people
are interested in," Harris said
following a closed-door meeting with
advocates for the developmentally disabled.
But joining the
waiting list for housing has been the only way that
families could obtain state assistance for
the developmentally disabled.
Harris said she will change that requirement.
The waiting list
stands at about 7,000 people. Roughly 1,000 people also
wait for daily job and recreational
programs. But until their names
reach the top of the list, people are
entitled to nothing unless the family is
in a crisis, Harris said. Many
parents say they are not willing to part
with their children until they are no longer
able to care for them.
"Families use the
waiting list as an insurance policy," said James W.
Smith, director of the Division of Developmental
Disabilities. "Some unfortunately cash
in that policy sooner than they really need to
because they feel, 'I better
jump on this now or I may get passed by.'"
Ellie Byra of
Flemington, whose 26-year-old disabled son has been on the
waiting list for a group home for
five years, said at this point, if her
name was called, "I would have to turn it down." But she
would like some help from the state at
her home.
"I think families are
going to be very excited about this," Byra said.
Under the plan, the
state will take 75 percent of what disabled people
in group homes earn to pay for
room and board -- up from the current
47 percent. That's the same percentage
as Pennsylvania, Connecticut and
Maryland; New York takes 88 percent.
Leila Gold of West
Orange, who heads the Coalition for Families, a
politically potent group that represents
parents of disabled children in
state institutions, said most parents rely on the disability
check to buy
their children everything from
necessities to frills. The average
disability check is $700 a month.
"We are going to have
some problems, I know that," Gold said.
In addition to taking
a larger portion of disability checks, the state
will also bankroll the revamped system by
seeking approximately $30
million to $60 million more in matching federal funds a year
from Medicaid, the
health insurance program for the poor.
Families will see the
revamped system during the 2004 fiscal year, which
begins July 1, Harris said. The
state will send case managers to
interview people about what kind of services they need.
Forty percent of
those with developmental disabilities are under age 22
and living in their family home, a
trend that is likely to grow to 50
percent by the end of the decade. Yet most programs are
geared to adults seeking a place to
live.
The state also has
had trouble cutting down the waiting list because of
a limited housing stock, the
addition of 600 new names each year
and a bureaucracy that didn't take
into account alternatives to traditional
group homes.
"We're been behind
the eight ball no matter how you look at it," Harris
said.
In 1991, the division
served 14,100 developmentally disabled people; it
was 27,500 last year, according to
the state's revamped community
services plan.
This is the second
part of Harris' plan to overhaul the $1 billion
system to help the
developmentally disabled. Earlier in
the year, the state invested $27
million in its seven institutions after five had failed
federal inspections. The money
is being used to hire more staff, improve
training and repair crumbling buildings.
