To: Rep. McKell, M.,
Subject: Services for people with disabilities
Hello my name is Jessica. I'm sure this is an issue brought up before, but thought I'd tell you our personal story in hopes of change! Everywhere else I’ve turned for help has become a dead end... Long story short, here goes :)
I have a brother, age 34 with a head injury he suffered at age 4 leaving him with a 'developmental delay/ intellectual delay' (aka mental retardation, but the term is no longer politically correct). He has the mental capacity of about an 8 year old, and can do most things independently such as going to the bathroom and showering, but he will never be able to be independent in the ability to work, drive, etc. The way the system for disabled persons here in Utah is as follows... as an infant/ toddler with a disability they are screened and rendered services in an 'early intervention program' as needed to assist them in growing/ developing as much as possible, put in an education program that fits their need (ie special education school or classroom) and they will continue in the special education system until the age of 22.
It is here where our system fails!! At the age of 18, they are chronologically adults, and unless their parents get court appointed guardianship, they can make their own decisions about everything even if its not in their best interest. They are however now eligible for such services as SSI (supplemental income for disabled persons) as well as Medicare. Our Division for Services for People with Disabilities (known more often as simply DSPD) has the capability to do wonderful things for children and adults such as funding for Companion Services, Community Living Support, Host Home Support, Professional Parent (foster home), Community Living, Residential Transportation, Supported Living, Chore and Homemaker Services, Supported Living Natural Support (family), Family Training/Brain Injury, Family Assistance and Support, Respite Care Support, Day Training, Transportation, Supported Employment Services, and Support Coordination.
All sounds wonderful right? The issue is these services can only be funded and provided for those individuals with the most critical need (ie severe aggressive behavior or severe medical need), the rest of us get put on a 'waiting list' which is currently over 2000+ people long!! Persons can be stuck on this waiting list for YEARS waiting for the funding to become available. The funds come from the Utah Legislation, and after voting only a small amount of funds get allocated to disabled people each year. Those that do not get picked for services, wait another year to see if the legislation gives more money and then maybe, just maybe some more services will be rendered. In the meantime, there are those individuals like my brother that don't necessarily fit the severe behavioral or health need, and they remain stagnant and no funding gets allocated. This is the case with almost all 2000 left on the list. After age 22 and school is out, where do these adults go? Many are not quite at a functioning level to independently get a job in the community without support or supervision. There are many many programs to help these situations, however most won’t even see us for an intake interview unless we have DSPD funding.
Some will let them come as “private pays”, however you’re lookin at anywhere from 20-80$/daynot including transportation. Some also offer transport at an additional fee, typically about 10$/day. If you add that up, 5 days a week you’re looking at about 600-1800$/month!! They will also suggest using their SSI funds, which are supposed to be used for their living expenses.. if they do have it, that is alot more than SSI will give in a month typically.
To better explain ‘day services’, There are "sheltered worksops"- large open areas with many DD individuals working on 'piece work', ie putting things together for packaging, shredding xrays etc and they get paid a very small amount depending on how much they do. There is typically alot of staff, assistance if needed and socialization w peers. There are "enclaves, or group settings" usually a group of 2-5 go out to different job sites with a job coach daily and do different things, ie car wash, lawn care, sweeping/ cleaning etc. There are "dayprograms" that don't necessarily emphasize work or independent living skills but more fun, socializing, field trips etc. And then there are those that go out in the community specifically to find independent jobs in the community. A job coach will help until they show complete independence and then they back away, leaving them to be able to get to/ from, and know what to do on their own. With alot of training of course. DSPD actually has a program for the latter called SWI (Support Work Independence) that some may qualify for while on the waiting list, however it is geared towards very high functioning individuals.
So my issue is this, what do we as caregivers of disabled adults do? I am at a crisis point, my parents have passed away long ago and I am his sole provider. I have to work, and without anywhere for him to go, he is left home alone as I have no other choice! He is unsafe, wouldn’t know to go to the neighbor for help if needed, in fact if the house caught on fire I don’t know what he would do. He does not know how to tell time, nor make anything to eat other than something simple such as a bowl of cereal. It’s literally like leaving your child home alone all day, but that would not happen as there are programs to assist paying for daycare. I don’t know what to do, I’ve gone to every avenue there is here in Utah for assist, but without the funds we are just stuck, and my brother suffers. Aside from being supervised and fed etc, he also lacks the socialization of peers he so desperately needs. Please please, can you help?
Jessica and Travis Pointon
Eagle Mountain, Ut