Colorado
Citizens in Need
Would
you rather live at home with your loved ones or in an institution surrounded by
strangers? This seems like a very silly
question, but it is a real one to those who are intellectually disabled. Currently,
there are thousands of intellectually disabled adults waiting to get help with
adult day services, respite care, counseling, transportation, job training
(when appropriate) and personal in-home health care. These services are provided by
Medicaid through the Home and Community Based Services Waiver (HCBS). HCBS has
two waitlists; one is for comprehensive care (an individual who needs 24 hour care)
and the other is for Supported Living Services (SLS). While the intellectually disabled
sit on one of these lists to receive services, their informal caretakers
(usually a family member) are suffering from chronic stress, depression, lack
of income and other health concerns. Thousands of Colorado’s intellectually
disabled citizens are going without services that would help maintain them in their
family homes and reduce the stress of their caregivers; the lack of funding for
these vital services needs to be addressed and made more of a priority by voters
of the state of Colorado.”
How do I
know this? I have firsthand knowledge. My
eldest son is twenty-one years old and intellectually disabled. His name is
Nathanael. He has a rare genetic disorder, Autism, Spina Bifada and Obsessive
Compulsive Disorder. His genetic disorder is so rare that it does not have a common
name, such as "Autism" or "Down Syndrome," but it has a
scientific name, Trisomy 5p14.1->5pter. It’s a mouthful isn’t it? Simply put,
Nathanael has a duplicated piece on his fifth chromosome and it is inverted,
which causes him to be intellectually disabled.
Like many other intellectually disabled adults, Nathanael
currently lives at home. He just recently graduated from Community Connections,
which is an extension of the public school system that strives to help
individuals with intellectual disabilities thrive in their communities (a
student can only attend the public school system until they are twenty-one). While
he was in school, Nathanael was learning how to cook a microwave meal, set a
dinner table, do laundry, tie his shoes, shave, ride a city bus, work,
volunteer, and be a productive citizen (as much as he was able). Nat loved all
his activities at school. He was a very active citizen in his community; he
volunteered at Habitat for Humanity, Larimer County Food Bank and the Poudre
School District. All that stopped once
he graduated.
Since his graduation, Nathanael has been waiting for his name
to come to the top of the SLS and Comprehensive waiting lists. The Supported
Living Services would provide assistance for Nathanael to continue to live as
independently as possible (either at home or on his own, whichever is more
appropriate). Nathanael was put on the Comprehensive waiting list as a back- up
plan, in case his condition worsens and he is in need of more care. He has been on these lists since he was fourteen. At his last assessment,
he was told it would be five or six more years before his name would come up to
the top of the list. The only way to move “up” on the list is if someone who is currently
getting services from the HCBS waiver dies or moves out of state. Every year,
at Nathanael’s assessment, the waiting period for him to come to the top of the
list gets larger instead of smaller.
Nathanael is not the only one who has
been waiting; there are thousands of others. According to Alliance, a nonprofit, statewide association of
Community Centered Boards (CCBs) and Service Provider Organizations (SPOs),
there are 3,746 (as of 2008) Colorado disabled individuals awaiting for a spot
to open on the waitlist (“Why”). The lists continue to grow. From June 2001 to
June 2006, the SLS waiting list has grown by 117% and the Comprehensive waiting
list has grown by 189% (“Why”). That is
a lot of disabled Coloradoans waiting for help.
While they are waiting for services, not only do disabled
individuals go without services, but the caretakers of these individuals are
also going without help. Caring for an
individual with intellectual disabilities is exhausting and extremely
stressful. A recent study shows that informal
caregivers of adults with autism have the same stress levels as combat
soldiers (Diament). As a result of the chronic stress of
living in a virtual combat zone, informal caregivers are more likely to suffer
from depression, stress and other health issues. According to the article
“Cutting Medicaid”, “Caregiving responsibilities are associated with increased
hospitalizations, depression, overall poor health, and higher mortality risks” (Mahan,
Bailey and Saly 12).
The need for the intellectually disabled and their caregivers
to receive services is granted by the Denver Post in an editorial, “Disabled
are Deserving, but Colo. Can't Afford a Tax Hike” (“Disabled”). Therefore, the
argument lies in whether the state can afford it or not. This editorial
declares the state cannot afford to alleviate the waitlist. “We do not endorse the measure for two
reasons: first, we can't support a statewide tax increase during these
troubling economic times; and second, these costs should be covered by the
existing state budget” (“Disabled”).
First
of all, the Denver Post’s argument of “we can’t afford it” is a poor one. If
the state cannot afford to raise taxes to alleviate the waitlist for the
disabled, why then could the state afford to raise taxes for building bridges
and roads on March 2, 2009? (Colorado, General Assembly, Legislative Legal Services). It seems Colorado can afford to raise taxes to make life
easier for travelers upon our roads, but cannot afford to raise taxes to make
life easier for the disabled and their caregivers. I find this contradiction appalling.
Secondly,
the Denver Post’s argument of “it should already be in the budget” is based on
a lack of information. The
state currently funds big institutions that house the disabled for thousands
more than it would cost to house them in a family home. In the state of
Colorado in 2010, the average annual cost of nursing home care for a
semi-private room was $72,300 (Mahan, Bailey and Saly 9). The annual cost per
slot on the Comprehensive waiting list is $33,360 and the annual cost per slot
of the SLS waiting list is $8, 620 (“Why”).
If the informal caregivers are not given the desperately needed services
for respite to reduce their stress levels, more caregivers will be forced to
put their disabled loved ones in a group or nursing home. While there is a waiting
list for disabled individuals to receive support in their homes, there is not a
waitlist for those who do not have someone to care for them. In other words, if
for some reason a caregiver can no longer bear the burden of caretaking (such
as an elderly parent), the disabled individual becomes the full responsibility
of the state and is housed in a group or nursing home. Doesn’t it make more
fiscal sense to financially support the intellectually disabled and their
caregivers, than it does to let the families get run down and force the
individual into a group or nursing home, of which the state has to pay the
bill?
Sadly, Colorado voters listened to the Denver Post and have
dismissed the option of raising state taxes for the intellectually disabled:
There were recent ballot initiatives that would have
alleviated the wait list. Voters actually rejected two ballot initiatives that
could have helped. Amendment 51 would have raised the state sales tax from 2.9
percent to 3.1 percent to pay for services that should be available now to
10,000 children and adults on a years-long waiting list for help (“Free”).
The lack of
votes to pass an amendment to alleviate the waiting lists is a further
detriment to the intellectually disabled population of Colorado. “Currently,
Colorado ranks 48th in the nation in fiscal effort toward providing funding for
individuals with developmental disabilities and their families” (“Why”). If Colorado voters knew that we
ranked 48 out of 50 for how well we care for our intellectually disabled, I
think the results shown at the poll would have been much different.
The intellectually disabled of
Colorado are in need. They need you to know that they are going without vital
services, and they are in need of your vote. Marijo
Rymer, executive director of The Arc of Colorado, states that “The individuals here are not just
under-served — they're not being served at all" (qtd. in “Disabled”). The
next time you see a proposal on a ballot for our intellectually disabled
citizens of Colorado, whether it is a small
rise in taxes to alleviate the waitlist, or not to make further cuts to the
Medicaid budget for HCBS, will you make it a priority to vote? Vote for
Nathanael, and the thousands of others like him, to stay at home surrounded by
his family and loved ones.
Works Cited
Colorado. General Assembly. Legislative Legal
Services. Session Laws of Colorado 2009 First Regular Session, 67th
General Assembly. N.p., 2 Mar. 2009. Web. 28 July 2013.
Diament, Michelle. "Autism Moms Have Stress
Similar To Combat Soldiers." - Disability Scoop. Disability
Scoop, LLC, 10 Nov. 2009. Web. 28 July 2013.
"Disabled Are Deserving, but Colo. Can't
Afford a Tax Hike." Editorial. - The Denver Post. Media News
Group, 29 Sept. 2009. Web. 28 July 2013.
"Free up Cash for Disabled in
Need." - The Denver Post. Media News Group, 10 Nov. 2008. Web.
28 July 2013.
Mahan, Dee, Kim Bailey, and Elaine Saly. Cutting
Medicaid: Harming Seniors and People with Disabilities Who Need Long-Term Care.
Publication. N.p.: Families USA, 2011. Families USA. Families USA
Foundation, May 2011. Web. 28 July 2013.
"Why Are There Waiting Lists for
Services?" Alliance Colorado. Alliance Colorado, n.d. Web. 28
July 2013.
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