Families unite
to challenge New Jersey’s “Contribution
to Care Requirements”.
September 27th, 2005
In January 2004, the Department
of Human Services (DHS), Division of Developmental
Disabilities (DDD), implemented new Contribution to
Care and Maintenance Requirements which are commonly
referred to as the “fee for service” .
In essence the regulation requires that individuals
or their representative payees must contribute approximately
75% of the individual’s income to the State
of New Jersey. The regulation defines income as, wages,
benefits (including Social Security and SSI benefits),
interest earned, pensions, annuity payments and support
from a third party.
Recently a large group of families, some from as far
away as Ocean County, came together to discuss their
options for challenging the Departments decision to:
- Take the funds from their sons and daughters or face
the State’s “threat” of being removed
from their group home or supervised apartment; and,
- As was announced as a part of the Divisions
New Direction, the States policy of taking money collected
through the fee process to fund services for others.
One parent (Dot) stated that there
are several issues related to what the State is doing
and “it just has to stop”. “Forget
the fact that our kids are left with nothing, the
real question is why are they taking this from our
kids living in the group homes so they can fund the
Real Life Choices program? When did it become my son’s
responsibility to fund services for people that State
doesn’t have the money to serve?”
She went on to say “Our problem
is not Real Life Choices. It’s a great program.
What is wrong is that they (the State) are taking
money from our sons and daughters to fund services
for other people rather than providing our sons and
daughters with what they need.” Dot sited several
examples of families paying for things it takes the
State a long time to address or that they never address.
These included a variety of things but the most striking
was that of vehicles. Dot stated that “agencies
are forced to use vehicles well after their useful
life” which she felt was not only wasteful but
potentially unsafe for everyone (staff, residents,
and the general driving public).
Another parent (Marie) went on to
say “it’s just not right. They are taking
everything away from my son and he isn’t left
with enough to do anything. What is the good of being
in the community if they can’t be a part of
it? So we pay for them to do the things that they
enjoy; have their quality of life. But, what happens
when we are gone? Who’s going to see to it that
they have something to have some enjoyment in life?
It’s just not right. They’re stealing
from one to benefit another.”
The attorney for this reportedly
rapidly growing group of families from throughout
New Jersey stated that “our firm has researched
this issue and it is our belief that the State is
in violation of federal law.”
Dot went on to say, we tried to
meet with the Division and the Commissioner and work
with them for over a year. Dot went on to say that
when a few of us did meet with people from the State
it was clear that they (the State) didn’t know
how the fee system was being implemented.
Lee, the brother of a person living
in a group home, joined in saying that “it’s
not right”. Don’t get us wrong, Real Life
Choices is not the problem. The problem is when the
DHS Commissioner (Commissioner Harris) announced the
“New Directions” for the Division, she
said that Real Life Choices would be funded with monies
through the fees.” Lee went on to say “now
that our parents have passed on my brother’s
benefits come from my mother and fathers social security.
This should benefit him; not fund services for someone
fortunate enough to still be living at home with their
mother and father.”
Lee stated that he subsidizes his
brother to ensure he has money for what he needs.
He added however, “My wife and I have children
of our own who could use the money we are using for
their uncle. They (the State) doesn’t understand
the far reaching impact of such an unfair practice”.
A great number of parents and family
members continued to speak out saying it is not right
for the State to take from one to benefit another.
Issues raised in discussion with the group included:
- Where the money goes saying it doesn’t go to
benefit their family member as benefits are intended;
and,
- The way they collect the funds is expensive
and in several ways a duplication of effort as now
they (the State) want people going into homes and
apartments to be Medicaid eligible; and,
- The special circumstances process is cumbersome,
confusing and intimidating with some families reporting
that Division staff initially didn’t know or
couldn’t explain the process.
Finally, Roger, another parent who
closed the meeting stated that “our child entered
the system and was served a few years prior to the
fee for service. In essence the State entered into
a contract. Now the State has changed the terms and
conditions of that contract to pay or
be thrown out of their home. This is
wrong.”
Roger went on to say, “we
are fortunate in that we can afford to help but what
of the hundreds or thousands who can’t?”
“It is just not right and we are going to stop
it.” With that the families closed the meeting
to continue the discussion with their attorney.
