CRISIS - Who will take care of our daughter when we DIE?

Recently, I had a meeting with a group of parents of adults with intellectual and developmental disabilities (IDD) try to answer the question: Who will take care of our adult child with a disability when we DIE or can longer take care of them? THE SILENCE WAS DEAFENING AS THERE ARE NO GOOD ANSWERS IN COLORADO. The State of Colorado has failed to put a system in place to care for the most fragile and vulnerable people with disabilities with significant support needs.

I am the mother of a young adult woman with Down Syndrome AND Autism. She has a functioning level of a 3-4 year old and needs constant support and attention. For the past several years, I have been researching where she is going to live and who is going to take care of her when my husband and I die or "retire" from caregiving and I have NOT found any workable solutions in Colorado. I have joined non-profit boards, talked to hundreds of people including HCPF and state legislators, joined a inclusive housing coalition, attended multiple housing conferences, and still have NO answers. It is depressing and scary to think of what is going to happen to our precious daughter when we are not here to care for her!

Due to the Olmstead ruling, people with disabilities are no longer allowed to congregate or live together, it is become much more complex to figure out housing and care for them. It is also more isolating for someone with a disability to live in a home by themselves or with their aging parents without any friends or peers. While living alone with supports works for some people with disabilities, it does NOT work for many who need 24/7 care and supervision.

She recently won a lottery for a Housing Choice Voucher but I cannot figure out how to make it work. She needs several caregivers as burnout is real when you cannot do anything for yourself while watching our daughter. For example, you cannot shower or leave her alone for any length of time as she may decide to elope from the home. The State of Colorado has said that we cannot put locks on our doors as she has the "right" to leave at any time; even though she is a elopement risk and safety risk. So it really requires that you have 2 or more people caregivers living with her. We currently use a team of several people to watch and care for our daughter full-time. For parents, it feels overwhelming to have to staff a home and be the back-up caregiver if anyone calls in sick or quits. We are ALWAYS on-call and have been caregiving since our daughter was born 22 years ago.

Colorado has set up a complex system where Medicaid PASA's (Program Approved Service Agencies) are supposed to provide the services needed for people with disabilities. However, The PASA's rely on parents to find staff as "it is too difficult" to find and retain staff as people can work at a fast food restaurant or gas station and earn a higher rate of pay than working with people with disabilities. As a result, many families are setting up their own PASA's, but that does not solve the program of what happens when the parents die!

Also, the government systems that create affordable housing do not interact with the systems that create wrap-around services such as caregiving and food for people with disabilities. The complexity of these systems is astounding for someone with a high level of intelligence to understand and impossible for someone with an intellectual disability to figure out how to navigate. Again, who navigates these systems when the parents DIE?

The only real answer that we have been given is a to place our "kids" into a Host home which is akin to adult foster care. But this is not a good solution for people who have significant support needs and/or behaviors. If the "host" gets tired of their "client" then they can put them out of their home at any point in time. This lack of stability is a huge problem for people who require stability and predictability in their life. Host Homes are also not closely supervised making them a good environment for abuse and neglect. I have talked to many parents whose adult child has been kicked out of multiple host homes as they are "too difficult". The host home providers just want to care for easy clients.

Today, I found out that 7 former Developmental Pathways group homes are going on the auction block on Oct 30th because they did not have enough funding to pay for staffing for care for the people with disabilities who lived there. When so many people need housing, they are closing group homes and auctioning them off... so depressing! With so many adults living with parents over 60, it is only a matter of time before many of these vulnerable people could be homeless or perhaps many are already homeless.

Mahatma Ghandi reportedly stated that "the true measure of any society can be found in how it treats is most vulnerable members". As a society, we are failing ourselves and our most vulnerable members. We can and MUST do better Colorado. It should not be this hard and complicated. There are too many barriers to creating housing for people with IDD. There needs to be a government level agency dedicated to solving this crisis of HOUSING AND SERVICES; as so many need both a place to live AND someone to take care of them.