Apr 22, 2021

Disabled Hays woman waits decade for services; Kansas wait list over 4,500

Posted Apr 22, 2021 11:01 AM
A Developmental Services of Northwest Kansas employee reads a book to one of the agency's clients. Individuals with developmental disabilities in Kansas are waiting as long as 10 years to receive state funding to receive services for agencies such as DSNWK. Courtesy photos.
A Developmental Services of Northwest Kansas employee reads a book to one of the agency's clients. Individuals with developmental disabilities in Kansas are waiting as long as 10 years to receive state funding to receive services for agencies such as DSNWK. Courtesy photos.

By CRISTINA JANNEY
Hays Post

39-year-old Bonnie of Hays has waited 10 years for a placement in a residential home with others with intellectual disabilities.

She waited until a crisis finally allowed her to qualify for a placement in a group home.

An online predator lured her into her confidence and was close to having her disability benefits transferred into his name before Bonnie's guardian, her aunt Barb Sherfick, was able to stop him.

Bonnie is living in an apartment owned by a family member, but Sherfick said she needs more support and guidance. This is the second time Bonnie, who has the mental capacity of about a 10-year-old, has been the victim of an online predator.

Sherfick said she hopes her niece's upcoming placement will open up her world to appropriate friendships, opportunities to be more active in the community and maybe even a job.

She said, sadly, it has just been a long time to wait.

"We are praying that she is placed in Hays or Great Bend, so we can visit and be close, but there are no guarantees," Sherfick said. "They need more facilities in the state and more funding of these people."

Bonnie's situation is common in Kansas. As of the beginning of April, more than 4,500 people with intellectual and developmental disabilities are on a waiting list to receive state-funded services in Kansas, said Jerry Michaud, president/CEO of the Developmental Services of Northwest Kansas.

The state is currently serving people who entered the list as of Nov. 2, 2011.

A health care professional with DSNWK gives a client a health check. Even individuals with serious physical disabilities may not qualify for state-funded services because of Kansas' lengthy waiting list.
A health care professional with DSNWK gives a client a health check. Even individuals with serious physical disabilities may not qualify for state-funded services because of Kansas' lengthy waiting list.

Unfortunately, many people who are on the waiting list end up in a crisis situation, such as Bonnie, before the state will take them off the waiting list, Michaud said.

The waiting lists put burdens on families. It also limits opportunities for individuals with disabilities, Michaud said.

"Each individual family is going to have its own unique circumstances," Michaud said. "Of course, they have aspirations like you or I with our own child, we would aspire they reach a certain age and they move on to the next stage in their life and they continue to grow and develop and mature in those ways.

"Families, I believe, have similar aspirations that their son or daughter would have life that is as productive as they can be and engaged in the community to the extent that they are able, but the options for that to happen in what would be the normal rhythm hit the road block when it comes to the resources that are needed for those folks to be successful out of the family's home."

The special education system in Kansas allows many students with intellectual disabilities to continue to remain in school until they are 21.

However, because the waiting list for community services is so long, many of those young adults "graduate to the couch," Michaud said.

Even those individuals who are high functioning and can live independently, usually need some kind of continuum of support, Michaud said. Those supports could include case management, assistance with grocery shopping, medication management or assistance with finances. 

"They may just struggle to do meal planning or get to the store, make the right choices when they get to the store and budget," said Natalie Ellis, DSNWK communication support specialist.

A DSNWK staff member helps clients with a craft project. Those individuals who do not qualify for state-funded services often "graduate to the couch," said Jerry Michaud, DSNWK president/CEO. 
A DSNWK staff member helps clients with a craft project. Those individuals who do not qualify for state-funded services often "graduate to the couch," said Jerry Michaud, DSNWK president/CEO. 

Individuals with greater needs may require assistance around the clock so they can remain healthy and safe. Individuals may need assistance with basic tasks, such as eating and using the bathroom.

"Think of an individual who may use a wheelchair so their ability to rise to go into the restroom and change to do those kinds of things [may be limited,]" Michaud said. "As a child, they might be 20 pounds, and [then] 40 pounds, 70 pounds, 100 and some pounds. The need doesn't change. It just gets more challenging."

A family member may be caring for this person, but as the caretaker ages their physical ability to care for the physical needs of someone who is disabled may diminish.

Individuals who are on the waiting list can be those who are more independent or those who have more intense support needs, Michaud said.

"There is a lot of love that is part of those families in supporting their son or daughter," he said. "There is no question about that, but it is the reality of carrying on. It takes the best of intentions of will on the part of a family and strains it. It's just the reality. Helping them and supporting them is what we have to do ... what we should do. It's the right thing to do."

Bonnie lived at home with family members for years, but her parents. However, as those family members aged, they could no longer care for Bonnie.

Bonnie's aunt said she wished she could give Bonnie more one-on-one care, but she works.

Michaud said he sees this often in families across northwest Kansas.

"Suddenly the circumstances change in terms of the support that was filling in at home, and suddenly the person may find themselves in a crisis situation," Michaud said. "That has been the avenue into the IDD system."

Entering services in this way is not the best for the individual or those providing the individual services, Michaud said. He described the system of having a roller coaster effect on families.

"It is a reaction or a response to something that says there is no other alternative," he said.

That individual may have made unfortunate choices that have to be dealt with. Sometimes law enforcement may have been involved with the individual. If challenges aren't dealt with, they are magnified, Michaud said.

The Kansas Legislature has expressed its interest in conducting an interim study on how to address the waiting list.

Funding is a significant factor in decreasing the waiting list. Intellectual and developmental disabilities are lifelong challenges and support services to address those challenges are needed for the life of that individual as well, Michaud said.

However, Kansas also has issues of capacity and beauracy.

If the Legislature provided enough funding tomorrow to fund services for everyone on the waiting list, there would not be enough slots available with the current service providers to fill those needs, Michaud said.

Not only is the capacity about the infrastructure to, for example, house someone in a group home, but also having the staff to work with that individual, Michaud said.

Service providers, including DSNWK, have historically struggled with employing qualified staff in part because of low pay for care workers.

Yet another obstacle for providers is the way people come off of the waiting list. When a spot for services opens, often when someone dies, the state takes the next person on the list. 

The person who died may be from Northwest Kansas, but the next person on the list might be from Kansas City. 

The service provider now has capacity, but can't serve anyone and the service provider in Kansas City may not have the capacity but has to create services for the person who is being funded.

This process creates a lot of instability for the service providers, Michaud said. DSNWK has 12 openings in its 18-county coverage area. However, the agency can't fill them because of the way the waiting list is managed.

"I would contend that in order to address a problem that has been developing over decades, it is going to take a little bit of time to figure that out," Michaud said. "But now is the time to put mechanisms — the plans — in place, so we don't continue to kick this can down the road and have our state's response to service needs wait until it blows up before we actually put the service into place.

"I know we all long for something different than that."

Michaud said he has a dream in which individuals graduate from the school system and they make a smooth transition into services that help them accomplish life's milestones at their own pace.

"When they approach and reach adulthood, there is a natural transition and support system that understands that all along the path and so when they graduate, their life graduates to the next level of their life being a life full and with purpose and value," Michaud said.

"That is our heart's desire, but there are a lot of moving gears behind the scenes for that to take place. As a system, we need to be thinking about that, but our gears are jammed up."