Iowans face long wait for disability services

Kyla Claussen is one of some 16,000 Iowans on waiting lists for disability services. -promoted by Laura Belin

My name is Kyla Claussen and I’m from Avoca, Iowa. I have an unknown progressive neuromuscular disorder that has been slowly taking skills away from me over the past five years. By March 2020, I was unable to walk independently anymore or work. Last August, I went on Social Security Disability Insurance (SSDI) and then applied for the Physical Disability Waiver and the Health and Disability Waiver.

I’m now waiting for services in my home, along with 15,956 Iowans on the waiting list for one of the waivers for people with disabilities. Most likely, I will be waiting for one to three years.

I wrote to Iowa Department of Human Services (DHS) Director Kelly Garcia in February 2021 to explain how I need help in my home with homemaking, due to my disability and further decline. I get exhausted easily after routine tasks.

Director Garcia had one of the DHS income workers call me to follow up. She had seen that I was receiving food assistance and commented that it was nice I could save money that way.

I replied that there is no saving money when you have to keep buying adaptive equipment to live on your own. She then told me that I don’t qualify for any interim help until I get on the waiver, because I make $600 over the limit on SSDI.

The income worker asked if I have any mental health issues that would get me services by the Mental Health and Disability Services. I said I do not. She suggested that she could see how my condition could cause a person to have a mental health problem. If I did have one, I could have gotten help from my MHDS region.

Iowans with a physical disability do not receive any case management services unless we are on the waiver. I asked what other options are available to me. The DHS worker said I should call 211. The person on the 211 line told me to call Iowa Compass. I’m back where I started, with no clue what’s going to happen next.

My disability has now progressed to the point that I will need to have a feeding tube placed. Fatigue makes it difficult for me to swallow. I’m also in the process of getting an augmented communication device, because it’s becoming hard for others to understand me.

I’m doing everything possible to stay in my home, but since I don’t receive any support, I often need to nap for several hours to recover from doing simple chores.

I do wonder: if I had received help from the beginning, would my disability have progressed so fast?

Editor’s note from Laura Belin: After reading this post, State Senator Sarah Trone Garriott tweeted, “This week Senate Democrats met with Director Garcia and DHS staff to learn what opportunities there are to address the waiver system so that our neighbors can get the services they need to be safe and be part of the community. Review and reform are coming, but not fast enough.”

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