Waiting For Help: How Long Is Too Long?

According to Kansas health department officials, a study to address the long wait periods for disabled Kansans to receive help from Medicaid will take two years to complete.

The study will concentrate on physically and intellectually disabled Kansans awaiting state services under the Physical Disability Waiver Program or the Intellectual/Developmental Disability Waiver Program.

The Kansas Department of Aging and Disability Services is conducting the study in collaboration with the Kansas University Center on Developmental Disabilities to establish a more efficient waitlist procedure.

Many have stated that the situation must be addressed immediately. Several families said they ran out of crucial supplies during open testimony. They testified to a Kansas healthcare committee in late September. Lansing resident Tera Jackson said that her daughter isn’t getting the incontinence products that she needs.

Kathy Keck, a mother of five children, three of whom have developmental disabilities and are medically fragile, said she left the workforce to care for her children more than five years ago. Keck said she doesn’t know who will look after them while she recovers from a mastectomy.

According to Keck, her daughter’s full-time nurse covers 52 hours per week, and her husband, also a full-time nurse, handles 40 hours per week of care, leaving Keck caring for her daughter for approximately 76 hours per week. Keck is unsure what she will do during her six- to eight-week mastectomy recovery period, during which she will be unable to do any hard work.

Rick Elskamp said his 21-year-old daughter, Sheridan, was placed on the waitlist in 2013 and is still waiting, with experts telling him the wait may last 10 to 15 years. Sheridan has sensory issues, epilepsy, as well as behavioral and communication challenges, according to Elskamp. Elskamp and his wife both work full-time, and the cost of their daughter’s care is exorbitant.

According to August 2022 data, 9,039 Kansas residents are enrolled in the I/DD waiver program. Roughly 4,814 Kansans are waiting to enroll. The longest wait time on the list is about ten years.

The Physical Disability Waiver Program offers support to Kansans between the ages of 16 and 65 who meet the requirements for placement in a nursing facility due to physical disability.

Kansans must meet Social Security disability standards and be Medicaid eligible to qualify. Statistics from August show that 6,138 people are registered in that program, while 2,414 people are on the waitlist. According to KDADS evidence, the longest wait time for the program was two years.

Unfortunately, this is a problem nationwide. In March 2021, more than 800,000 individuals across the country were on Medicaid waiting lists for home and community-based services.

The states with the most individuals on waiting lists are primarily in the south and east. In 2015, 35 states maintained waiting lists for waiver services. At the time, Texas had 232,068 people on such waiting lists, while North Dakota only had three. There are no waiting lists in Delaware, D.C., Hawaii, Idaho, Massachusetts, Missouri, New Jersey, New York, South Dakota, or Washington.

Being denied access to services harms millions of people nationwide. Kyla Claussen lives in Iowa. She has a severe and unexplained illness. Kyla lives in the small town of Avoca, Iowa, and, while she is happy there, she says being in a rural location limits her access to help. Making matters worse, she is on four different medical waiver waitlists, each with a 1-4 year wait time.

Medicaid is a lifeline for me as well. I am one of the millions of Americans who benefit from home and community-based services provided by Medicaid. I am fortunate to live in Massachusetts, which has no waiting list for services. Medicaid pays for my PCA services. My PCA helps me with daily living activities, including toileting, bathing, and dressing. Without my PCA, I fear I might end up living in a nursing home. In other words, without Medicaid, life as I know it would be gone in an instant.

Medicaid’s home and community-based services enable disabled people to live at home rather than in an institution. Medicaid is vital for many individuals, including me. Waiting lists need to be eliminated, and Medicaid must be expanded. Without help, people are often forced into unsafe environments, which can have devastating consequences.


Diament, Michelle. “Waiting Lists May Be Eliminated for Disability Services Provided by Medicaid.” Disability Scoop, Disability Scoop, 22 Mar. 2021, https://www.disabilityscoop.com/2021/03/22/waiting-lists-may-be-eliminated-for-disability-services-provided-by-medicaid/29252/.

Leone, Laryssa. “Iowans with Disabilities Struggle with Waitlists for Medicaid Waivers.” We Are Iowa Local 5 News, Tegna Inc. , 31 Mar. 2022, https://www.weareiowa.com/article/news/health/iowans-with-disabilities-waitlist-struggle/524-861ff725-342f-4dc7-86e5-029d4cb58cc8.

Mipro, Rachel. “Kansas Disability Waitlist Study Could Take Two Years as Needs Mount.” Kansas Reflector, States Newsroom , 21 Oct. 2022, https://kansasreflector.com/2022/10/21/kansas-disability-waitlist-study-could-take-two-years-as-needs-mount/.

Mipro, Rachel. “Parents of Disabled Kids Urge Kansas Lawmakers to Expand Aid and Fix Issues with Health Care System.” Kansas Reflector, States Newsroom , 27 Sept. 2022, https://kansasreflector.com/2022/09/27/parents-of-disabled-kids-urge-kansas-lawmakers-to-expand-aid-and-fix-issues-with-health-care-system/.

“Number of Persons on Medicaid 1915(c) HCBS Waiver Wait Lists, 2016.” Center On Disability , Center On Disability , 31 Dec. 2016, https://centerondisability.org/ada_parc/utils/indicators.php?id=9.

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