The System is broken - New Approaches

[Developmental Disabilities Advocates]

I just participated in a Webinar Sponsored by WiSE "Creating Community
Connections, Job and Careers with Declining Paid Support"

This was extremely helpful and exciting to hear some of these ideas
which this group utilized. There were a few points that I would like
to discuss which the presenter touched on and are issues that we have
come up against in working within the system.

The "System" is a blockage for many and we need to find ways to work
outside the DD system. This takes building community with those who
are not necessarily involved in the DD system but connecting with
people who share interests.

What I particularly found interesting was (maybe this wasn't the
intention of the presenter but this is my concern with only focusing
on "jobs" and "careers" in person-centered planning) was that we need
to look at what is MEANINGFUL to the person - not necessarily what
will become a job for that person. I believe that the DD system does
not look at what is MEANINGFUL for the person and we need to do this
in order to improve the quality of life for our loved ones.

I also found it interesting to hear about the failure of "person-
centered planning" and why it doesn't work - we need follow through
and a wider perspective of possibilities.

The most glaring issue to me was because the system is divided into
community based waivers and institutions, those who reside in the
institution, although they are able to participate in the community at
large, the system denies them the ability to do so. The funding is
split between "community (waiver)" and "institution" and the two do
not mix. As a parent of a teenager (now adult I guess since he turned
18) this is a HUGE problem. Not only is this caused by funding but
this is also caused by the advocacy movement of those who continue to
make this divide and pit one group against another. When one of the
largest advocacy groups and all it's subsidiaries (The Arc) do not
support any type of congregate care, even to the demise of some of
their own community based programs, it hurts EVERYONE!

We need to think of a continuum of care - it's not one or the other.
There are many who will flip-flop between these two systems and there
are many who go from one system to another and stay there - but in any
case, being in one of these systems does not mean that that person
cannot participate in community at large events yet because of the
funding source, many people in the institutions are prohibited from
participating in community events unless those people have guardians
who take it upon themselves to make these interactions happen.

This is where building natural supports comes in - natural supports is
not only for those who live in community residences but also in the
institutions. If people did not know our son lived at Fircrest, I
don't think that anyone who knows him in the community would think
that he needed the supports at Fircrest in order to be healthy and
safe. As a parent, I am focusing on building these natural supports,
not only for our son, but for others in the institutions who could
greatly benefit from some of the same types of programs which those in
community residential programs are able to access.


The problem - once again the "system". We are working on ways to
circumvent the blockages which the "system" puts up. I am committed
to this so that all can have MEANINGFUL relationships and activities
for them.

Cheryl