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The Waiver: Mental Health and Disability Services in Iowa

Durrie Bouscaren
Iowa Public Radio
Jim Lynch and his son Nolan, 9, participate in a home-based therapy session in Des Moines.

Legislators this year approved increased funding for a program that financially supports Iowans with disabilities who receive home-based care. The $6 million allocation to “buy down” the two-year waiting list is not a done deal. As Iowa Public Radio’s Durrie Bouscaren reports, advocates are concerned Governor Branstad will veto the funding, as he did last year.         

Legislators this year approved increased funding for a program that financially supports Iowans with disabilities who receive home-based care. The $6 million allocation would “buy down” the two-year waiting list by about 15%, bringing about 1,200 more people into the program.

Sitting around their kitchen table, the Lynch family works with two therapists on a relationship-building game. Using a specialized deck of Apples to Apples cards, they give each other compliments, and learn to take constructive criticism.

Quinn and Nolan Lynch are 11 and 9 years old. Both with multiple diagnoses including ADHD and Asbergers, their parents are able to pay for community based care with the Children’s Mental Health Waiver. The program reimburses payments for doctor’s appointments, therapy, and respite care—says their mother, Karen Lynch, as she tics off a list of regular appointments.

“We go to occupational therapy once a week, once every three months they have a meeting with a psychiatrist, check how their meds are doing, they see a psychologist…”

Karen is a teacher. Her husband Jim is a self-employed attorney. Jim says his insurance has a high premium and a cap on what it will cover for mental health.

“Even if you’re talking about a couple therapies and medication every month… it adds up really fast,” Jim said. “It’s hard to sit and have a conversation about well, does he really need physical therapy?”

There are 11 types of Home and Community Based Services waivers available in the state of Iowa. Some, like waivers for people with intellectual disabilities or the elderly, are fully funded and have no wait list. But families applying for waivers for Children’s Mental Health, physical disabilities, and brain injury may wait as long as two years to get into the program.

Karen Lynch says the family spent 23 months on the waiting list for their younger son—costs for their sons’ care mounted so high, they nearly had to sell their house.

“We generally aren’t people you think of as getting state support. But the waiver has allowed us to do things we dreamed of doing for our children when we had them. Take them on vacation, get them a bicycle that works for them.”

Even 9-year-old Nolan remembers the time before he could use the waiver program.

“I wouldn’t think it would be fair for other kids that need that stuff not to have it,”

Last month, there were 7,987 people on the various wait lists. A $6 million budget appropriation to the Iowa Department of Health and Human Services was approved by the state legislature this year to bring about 1,200 more people into the program. Moments after signing a proclamation declaring Iowa Children’s Mental Health day last Friday, Governor Terry Branstad said he has yet to weigh the advantages of approving the funds. He vetoed a similar measure last year.

“As governor I have the responsibility to make sure it all fits together. That’s the reason why I don’t make these decisions without seeing the full picture and knowing what the full budget implications are going to be,” Branstad said.

Disability advocates mounted a lobbying effort throughout the legislative session to secure the funds.  Families and physicians argued the wait for care can set back a child’s development, or lengthen the recovery period for someone with a brain injury.

Geoffrey Lauer is Executive Director of the Brain Injury Alliance in Iowa City.

“Home-based care is closer to home, obviously. It helps people stay connected to their families and communities as opposed to be removed to an institutional setting. It’s frankly more appropriate, when you ask people where they want to be,” Lauer said.

The governor has another two weeks to finish signing bills from the year’s legislative session.