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Thousands of Kansans with disabilities wait years for services

Published: Oct. 14, 2018 at 3:00 PM CDT
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Thousands of Kansans with disabilities are not getting the services they need through KanCare.

Wichita siblings Philip and Katie Cole both have Fragile X Syndrome. Their mom Jennifer Cole gets them involved in as much as she can, like singing, theater, and outdoor activities such as walking and biking. However, she worries about what will happen long-term.

Cole has spent years trying to get Katie and Philip off the waiting list for Home and Community Based Services (HCBS) under KanCare.

Those services vary depending on the individual needs of the person. In-home supports may include personal care services. There are also day programs that support work and community involvement to help people go grocery shopping, go to the movies, or go to church. Other supports include group homes, job coaching, or overnight respite, to name a few. The idea is to help people with disabilities remain in the community and to give relief to their caregivers.

Data from the Kansas Department for Aging and Disability Services (KDADS) shows more than 24,000 people are eligible to receive HCBS. The state breaks down HCBS waivers into seven different categories:

• Autism

• SED (Serious Emotional Disturbance)

• TA (Technology Assisted)

• FE (Frail Elderly)

• TBI (Traumatic Brain Injury)

• PD (Physical Disability)

• I/DD (Intellectual and Developmental Disability

The most recent data from

shows 3,761 people with intellectual and developmental disabilities (I/DD) are on the wait list.

Katie was finally taken off the waiting list about a year ago, but Philip has been waiting almost 8 years.

“It’s just hard. I’m at a loss. What do you do?” said their mother, Jennifer Cole.

Eyewitness News reached out to KDADS. A spokesperson told us 2,528 people with I/DD have been waiting more than three years for services; 1,480 have been waiting more than five years; and 241 have been waiting more than seven years.

“I just feel bad for people that are getting on the list now. If it’s going to be 13 years for them, holy cow! I mean, it’s just sad. It’s frustrating,” said Cole.

Aldona Carney was able to get her son Neil off the waiting list using the crisis exemption. He has severe autism.

People are eligible for the crisis exemption if they fit one of these two criteria:

• Documentation from law enforcement or the Department for Children and Families supporting the need for protection from confirmed abuse, neglect, or exploitation.

• Documentation substantiating the person is at significant, imminent risk and is capable of performing serious harm to self or others.

Carney said she is thankful her son is able to receive services. She sat down with Eyewitness News because she is worried about others who may not get the services they need.

“People don’t have a clue that it takes seven to 10 years to move someone off the waiting list who is a lot like my son Neil, who needs the services and is severely disabled. They can’t believe it. They’re appalled by it, but yet nothing seems to ever get done,” said Carney.

The thought of her son not being taken care of hits her at her core.

“I hope to live one day longer than my son with autism so I can be there for him to advocate for his needs,” Carney said, emotional. “I think the scariest thing as parents is to not know who’s going to take care of your child. We want him in a stable situation where he can stay happy and healthy and live as independently as possible.”

Local leaders from Wichita area organizations that support people with disabilities are concerned too.

Starkey CEO Colin McKenney said the long wait list has been “defeating for people” who need financial support for services.

Starkey supports more than 500 people with intellectual disabilities through business, employment, residential, life enrichment, and case management programs.

“No family should have to wait three years to get funding. Well, now that waiting list is eight years long, and based on the number of people who are coming off each and every year, it’s continuing to grow,” said Kevin Fish, Executive Director of The Arc of Sedgwick County.

The state currently serves more than 9,000 people with intellectual and developmental disabilities. However, KDADS data shows the number of people waiting for services has steadily risen since April 2018.

Advocates contend both the problem and the solution is money, and state lawmakers are the ones who set the budget each year.

“They have to say that it is worth this investment and we need to find the money that is needed to serve these individuals,” said Fish.

There has been progress. Lawmakers have increased reimbursement rates for HCBS twice in the last two years; four percent this year and three percent last year.

McKenney told KWCH 12 this was a welcome change, after almost a decade with no increases. It means more money going to organizations that provide services, so they can grow and keep up with needs.

The Kansas Department for Aging and Disability Services said they already presented a plan to the legislature for tackling the HCBS wait list in November 2017.

A spokesperson said KDADS requested an additional $200 million in state funds to reduce wait times. For the fiscal year that runs from July 2018 through June 2019, KDADS requested $90 million in state general funds to reduce HCBS wait times, and the agency requested another $110 million in non-general state funds to reduce the length of the HBCS wait list.

The spokesperson told Eyewitness News the 2018 Legislature did not fund that request. Instead, lawmakers asked the agency for a five-year plan to reduce the waiting lists.

KDADS will present that plan to the legislature at the beginning of the 2019 legislative session.

Meanwhile, the wait is painful for Cole, who worries about her son Philip.

“You’re at the mercy of the state. I don’t think they always see our problems as something as important as all the other things that are going on,” said Cole.

KDADS reports, in both 2015 and 2016, they were able to clear the physical disability wait lists entirely. According to the most recent data, the number of people with physical disabilities on the wait list is 1,657.