Final Essay

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.