30
years of
change: The
lives of
people with
disabilities continue
to
improve
The care for people with
developmental disabilities has changed considerably in this country in the
last 30 years. Before the 1970s, many who had developmental disabilities
were living in large institutions, with very little contact with the outside
world. Today, people with developmental disabilities are ideally making
their own decisions about where they live, work and play.
Nancy Rosemore, Director of Home
and Community Living Services for LSS, has been working with people with
developmental disabilities for over 20 years, and has been witness to
tremendous change. We sat down with her and asked her a few questions about
the past present and future of care for people with developmental
disabilities:
When you starting working
with people with developmental disabilities, how were things different? How
have the changes that have occurred improved people's lives?
The supports we provide to people
with developmental disabilities today have come from over 20 years of hard
work and slow political change. It seems that every 3-5 years the services
evolve, becoming better and more focused, and more attuned to the wants and
needs of the people we support. Most of this is driven by advocates, people
with disabilities, and families who have a stake in improving the access to
services and supports.
In the past, people lived in
state hospitals or in large group homes, and few families kept their
children at home. Families didn't know how to meet the child's needs, the
cost of care was high, and there was a stigma associated with having a child
that was different. Placing a child in a state institution was the accepted
norm. Parents who wanted to keep their child at home were counseled against
this by friends, family, and the medical profession.
Care at these hospitals and
group homes, while deemed "state of the art" at the time, often revolved
around medication and behavior control. Services were marginal at best -
only food, shelter and safety. There were very few structured activities or
learning, as people were seen to be incapable of living any kind of
productive life.
Today people live in our
communities, in small homes, nestled in neighborhoods throughout the state.
They go to work, they visit with their families, and even go on vacation.
They have lives much like yours and mine. Many families now never consider
placing their child out of home. In fact schools are now mandated to serve
children with developmental disabilities from birth. There are supports in
place for families, beginning at the hospital, and continuing throughout the
school years.
The acceptance of people with
disabilities within communities is growing, but it will take a few more
years of "evolution" to come to the point where people don't stop and stare,
or ask people to leave a church or a restaurant because their disability
makes others feel uncomfortable.
How do you see care changing
in the future? What new trends are developing?
I believe Consumer-Directed Community Supports is the next step in this
evolution. It moves the control of services to the individual or their
guardian, where it belongs, while maintaining safeguards to protect against
financial abuse. This allows people to choose the supports that are right
for them. Being able to choose the people who will come into their home to
support them is important. They are entrusting these staff to help them
achieve their life goals. If it was you or I, we would want a say in these
important decisions.
Each person should feel they
have a valued role in society. I believe the general community is starting
to understand and accept that a person with a disability can hold a job, can
live on their own, can make choices, and can have a life. No matter the
severity of the disability, people can make choices and decisions about what
they want. We just have to listen.
