Dollars and Sense of Funding Disability
People don’t want to hear it called the big business of disability but that is a reality.
There are parents and people with disabilities across NYS and around the world who want something different. They want people to be able to live with
dignity and without fear of abuse or ridicule.
In as much as agencies have been developed and funded through the
decades to do just this, systems have been slow to change. Has
there been any data collected, analyzed and studied regarding allegations of
abuse? Charges of abuse? Use of psychotropics to control behavior in
congregate care? For agencies with a
pro-active approach to incident investigations, have the number of incidents
NYS OMRDD has a mission to help people with disabilities live richer lives and a vision that people with
disabilities enjoy meaningful relationships with friends, family and others in
their lives, experience personal health and growth and live in the home of
their choice and fully participate in their communities.
It is a mission with a different focus than that of years ago which was a “duty” to provide food, clothing, shelter and rehabilitation services to people with disabilities.
In as much as the mission sounds abounding with opportunity, the reality of life for a person with a disability
who lives in a residential setting or dependent on services for every part of
their day, it is not always as lofty as the current mission and vision.
Agencies are pressured to do more with less, such as increasing the numbers of people living in a congregate
setting with less funding. This is
directly in opposition to what people with disabilities, parents and provider
organizations have been striving for over the last two decades. Even NYS’ newest model, CSS will always cut
short what is truly needed to live that richer life.
Family members, people with disabilities and others “who want something different” dream and hope that
their young adult/adult can someday be a neighbor, a parishioner, a club member
and customer in local stores. They want
a life beyond entitlements but barriers are always put in place to prevent
Parents try to plan for the future; for a time when they are no longer around or able to adequately care for a person.
Knowing the limitations of the services systems, many are hesitant to make
moves to independent living because the reality is once a move is made, a
person with a disability often becomes a resident and a consumer. They become a
member of the exclusive club called “clienthood”. Clienthood comes with an envelope with a
person’s allowance, which is probably locked up and taken out on the special
occasions called an “outing in the community”.
Where does a person live and “be” if they go for outings in the
community? Even though it will most
likely not be found in writing, there is continuous pressure to increase the
numbers of people living in a congregate care setting. And yes, even though most families and people
with disabilities whimper or scream every time they hear it, people with
disabilities assigned to residences are still placements, clients and beds.
In NYS and across the country, there have been think tanks, learning communities, learning institutes, inclusion
institutes, alliances and advocacy associations funded for years. Some are inclusive of all constituent groups;
some are not. Some have purposefully
excluded other groups because they weren’t “members” or because they brought a
perspective that was not aligned with a core group. Some were excluded because the “sand box” was
a closed group. Some developed an agenda that was not quite the spirit or
intention of the initial funding. Have
they made an impact and difference in systems?
Some say parents are the problem and hold their kids back.
When funding is provided to one organization to create a learning community, all too often there is a focus of
protecting what is already in existence, with a small focus on how to create
something different. This stuff has been
learned and studied and thought about for decades. Before more funding is put
into learning communities, think tanks,
profiles of distinction and pockets of desired innovation, there has to be consensus
that the leadership in government is on board and supportive beyond bi-monthly
meetings and discussion groups.
Before more learning institutes, learning communities and think tanks are funded, there has to be an agreement
that constituent groups are included, with detail as to how they are
included. “Included” identifies how a
person’s expenses are covered to enable them to be partners in panels and
committees. It is often stated that stakeholder groups
will include people with disabilities and family members, but there is no
definition as to how they will be supported to participate.
There are funding streams responsible for developing new ways to improve the delivery of services and supports to people
with developmental disabilities and their families. Now may be the time to look at what % of
resources are allocated to groups and
people with disabilities vs. trade associations representing coalitions that do
not gather equitable input from families and youth with disabilities who will
be future leaders.
There used to be an evaluation component to many parts of our work and service systems. That seems to be the first item to go in this
time of economic crisis. Evaluations are
important. However, there are limitations to their value because they are only
evaluating those included and who are involved.
Not the ones who have yet to receive assistance or be brought to the