WA Should Offer People With Disabilities Dignity, Choice.
By
Stacy
Dym
Special to The Seattle Times
Pink-painted
walls. A cat. The freedom to eat popcorn while you watch your favorite
TV show. These aren’t luxuries, but they felt that way to my sister when
she was finally moved from a state institution for the developmentally
disabled into a community-based group home almost 40 years ago.
Thanks to the
expansion of
state home and community-based services (HCBS), she was allowed to
waive her so-called “right” to live in a restrictive institutional
environment. Instead, she could choose a home in the community that gave
her freedoms most of us take for granted while still
providing the care she needed.
Dignity, for her, was as simple as a choice.
Today,
78%
of
people with intellectual and developmental disabilities in Washington
state live with family for the majority of their lifetime. This is
largely
because there’s nowhere else for them to go.
Although large institutions are no longer the norm, home and community-based services have never received a
comparable
level of investment in our state. Today, almost
one-third of
people with IDD who’ve been identified by the state are still waiting for a chance to live in the community.
When
family resources run dry, caregivers age or someone gets sick (and they
will), crisis is imminent. For people with complex health or behavioral
needs, many
get stuck
for years in the hospital, state institutions or unfit environments that were never meant to be permanent placements.
Now, as our Legislature stares over a
fiscal
cliff, people with developmental disabilities and their families are terrified about what lies ahead.
When
budgets tighten, the instinct is to cut everywhere equally or eliminate
nonessential programs. The fact that HCBS are considered
“optional”
in our funding structure is a relic of an outdated system that funneled
children and adults into segregated institutions — often involuntarily —
before we had widespread access to high-quality community care.
Our state is at the tail end of a decades-long
transition away
from congregate institutional settings (also known as residential
habilitation centers, or RHCs). Although we’re on our way to joining
18
other states that have already eliminated RHCs, the risk of re-institutionalization is a very
real
fear for many people with developmental disabilities.
Decades of research have proved again and again that community-based services
produce
better outcomes and cost less than crisis intervention or institutional care. When families or people with IDD are asked directly, living in the
community is also what most of them say they prefer.
The most expensive and least humane option shouldn’t be our default,
but that’s how things stand currently, which puts HCBS at risk for cuts.
Home and community-based services are
wildly
popular and significantly cheaper than the alternatives. This isn’t compassion vs. fiscal responsibility — it’s both.
Without
HCBS, people with intellectual and developmental disabilities don’t
just lose quality of life. They lose life as we know it. These services
provide someone’s
wheelchair and someone else’s essential medication. It might pay for
someone’s only meal of the day that fits life-sustaining dietary
requirements. Often, these “optional” services are the trained caregiver
who helps someone shower, the driver who gets someone
else to their job, or the case manager who is the only person checking
if someone else is still alive.
To compound this fragile reality, the fresh avalanche of
funding
cuts and attacks on civil rights coming from Washington, D.C., has made a precarious situation for many families into an untenable one.
I’d
like to name this clearly: Any cuts to services for people with IDD
will be catastrophic. Our community is still barely recovering from the
cuts
to services made
during the 2008 financial crisis. It is understandable that our state
budget cannot add anything new as we face a massive shortfall,
but the waitlist of 23,000 people is evidence that this system, which
is supposed to provide a safety net, is already failing too many.
Home
and community-based services are not simply nice to have. They are the
only dollars available that allow humans to eat, bathe, move, work and
live with
basic dignity.
They are pink walls and a cat and a favorite meal. They are choices. They are home.
Stacy Dym: is
the executive director of The Arc of Washington State, which advocates
for services and programs for people with intellectual
and developmental disabilities of all ages and their families.
