Department of Human Services Commissioner Gwendolyn L. Harris
yesterday announced broad changes to the state’s system of services
for people with developmental disabilities that will shift the
state's exclusive focus away from developing group homes to
providing more services so that families can keep their loved
ones at home.
These changes include:
- Increasing programs and supports for people with disabilities
living at home with their families
- Revamping the waiting list for community programs to more
accurately reflect the needs of those waiting for services
- Increasing federal reimbursements for services provided
to people who live at home with their families
- Increasing the percentage of the personal contribution to
the cost of care in residential programs
- Continuing to improve services and quality control in institutions
"When I took over the job as commissioner seven months
ago, it was evident that the state's service system for people
with developmental disabilities was in crisis," said Harris.
"The federal government was threatening to decertify our
institutions. The waiting list for community services had grown
longer and longer every year. It was time to take a look at
the entire system."
"Many parents of developmentally disabled adults have told
us they would prefer to keep their loved one at home, said Harris.
"We need to make this possible for families."
"Further, these reforms will bring in more federal revenues
and enable us to serve more people with the dollars we have;
continue our improvements in the developmental centers; and
make the waiting list truly reflect the needs of consumers."
Yesterday, Harris briefed major advocates representing the
interests of people with disabilities and their families about
her proposed changes.
In attendance were: the Developmental Disabilities Council,
the Arc, the Elizabeth Boggs Center at UMDNJ, the Center for
Outreach and Services for the Autism Community, the Epilepsy
Foundation, the Developmental Disabilities Health Alliance,
Inc., the Alliance for the Betterment of Citizens with Disabilities
and other representatives of disability organizations.
"After assessing the entire system, it was clear that
people taking care of relatives in their homes were not getting
their fair share of resources. We need to make sure that group
homes and supervised apartments are available to people who
really want them but we also need to offer other services as
well. In short, we need a whole new way of doing business."
Changes to services and operations include:
INCREASING SERVICES FOR PEOPLE AT HOME: Most of the people
on the Division of Developmental Disabilities (DDD) caseload
live at home with family members and want services to be able
to stay in their own families’ home.
Only 6.6 % of the DDD budget pays for services for 18,600 individuals
living with their families. Forty percent are under age 22 and
that percentage is expected to increase to 50% by the end of
the decade.
The plan will broaden the types of services available to people
living at home. These services include: devices to assist individuals
to remain in their homes through the use of technology for speech,
lifting and mobility, personal care or respite care to help
provide a break for family caregivers and programs to attend
during the day to learn personal or employment skills.
The department will apply for an expanded Medicaid Community
Based Care waiver which will make these services -- which are
currently 100 percent funded by the state -- 50 percent federally
reimbursable. This could bring an estimated $35 million back
to the state to expand services.
MAXIMIZING FEDERAL REIMBURSEMENTS AND INCREASING FISCAL RESPONSIBILITY:
The maximize federal revenue, DDD will (as indicated above)
apply for an expansion of the Medicaid Community Based Care
Waiver, require that individuals become eligible for Medicaid
prior to seeking services and require that people receiving
services contribute more of their SSI benefits to the costs
of their room and board.
Currently the division does not require people to be Medicaid
eligible prior to receiving services in the community. If the
division requires everyone to become eligible, 50 percent of
the cost of services would be reimbursed by federal dollars.
New Jersey is currently claiming only 33% of the available 50%
of federal reimbursement. Maximizing federal reimbursement could
yield $30 to $60 million more to the state to reinvest in services.
Additionally, the state currently requires that individuals
contribute about 47 percent of their SSI benefits to the costs
of their room and board, while the national average for this
contribution is closer to 75 percent. The average disability
check is $700 a month and group homes, supervised apartment
programs and developmental centers provide for nearly all of
the person’s needs. Additionally, when individuals retain more
than $2,000 in savings, they lose their eligibility for Medicaid.
Increasing the individual’s contribution to the cost of care
will allow the reinvestment of funds to provide new services,
to more individuals.
CONTINUING TO IMPROVE SERVICES AND PROGRAM QUALITY IN INSTITUTIONS:
This year the department added an unprecedented 514 new direct
care positions and 222 new specialized staff such as psychiatrists
and psychologists to its developmental centers to bring these
centers back into federal certification. DDD will continue to
reduce the census at these centers and will maintain the level
of staff, increasing staff-to-resident ratio and increasing
the quality of care for the remaining residents.
To maintain quality, both institutional and community-based
programs will receive unannounced visits from inspectors and
more frequent licensing inspections. Licensing violations will
be documented, responded to within 30 days, and corrected. Announced
licensing inspections will change from every two years to every
year beginning immediately.
The division will continue the use of its newly developed
quality-assurance team that regularly visits all institutions
and brings about the use of best practices to maintain federal
certifications.
REVAMP THE WAITING LIST: The waiting list for community services
has continued to grow despite the allocation of millions of
dollars over the last decade to reduce it. DDD will assess the
needs of the 6,500-person waiting list to plan appropriately
for those on the waiting list. An NJIT study of people on the
waiting list year found that the actual number of people on
the list is far less than was thought. For example, of the 1,842
people on the urgent category of the list, 34 percent no longer
wanted or needed a residential program Additionally, another
25 percent of people on the waiting list historically decline
placement when it is offered.
Families have told us that they use the waiting list as an
insurance policy and some are cashing in that policy too soon,"
said DDD Director Jim Smith. "Many families were seeking
residential programs only because they felt they had no other
options. "
"Many family members aren’t looking for a typical group
home like we were 10 years ago," said Ellie Byra of Flemington
whose 26 year old son lives at home and is on the waiting list.
"Families are not able to get what they need. The choice
is either a very expensive group home or nothing."
DDD currently provides services to approximately 30,000 people
with developmental disabilities, 6,500 live in state funded
group homes and 3,300 persons reside in the state operated developmental
centers. Approximately 18,000 people live at home with their
families.
The DDD FY’03 total budget is 1,064,715,000 - 634,624,000 from
state funds and 391,642,000 from federal funds.
