Disabled Iowans still wait for help, despite new money

More disabled Iowans are being added to waiting lists for state assistance, despite $6 million that legislators earmarked last spring to reduce the number of those waiting for help.

More than 9,000 Iowans are waiting, often for more than two years, for therapies and services to help them deal with mental or physical disabilities.

Patient advocates say they've been told that the Iowa Department of Human Services has spent little of the $6 million that was supposed to speed up access to the services, starting July 1. A department spokeswoman said Tuesday that the agency will soon ramp up the effort.

Geoffrey Lauer, executive director of the Brain Injury Alliance of Iowa, said many people's conditions decline as they wait for therapies and support services. "They end up homeless. They end up in inpatient psychiatric facilities. They end up in jails and prisons," he said.

Legislators approved the money last spring, and Gov. Terry Branstad signed the bill. The governor had drawn fire from patient advocates in 2013, after he vetoed $8.7 million that legislators wanted to spend for the same purpose.

The programs are organized under Medicaid, the joint federal and state health-insurance program. States have the option of including services for people with an array of disabilities, including those caused by brain injuries, mental illness, intellectual disability and physical issues.

A DHS report shows the waiting lists have continued to grow. In June, 8,407 people were on the lists. By October, that number had climbed to 9,289. All of those people have been deemed qualified for the services.

Department spokeswoman Amy Lorentzen McCoy said the agency must ensure the system, including private service providers, has capacity to add services before it opens new slots in the special Medicaid programs. She said the department will soon start opening about 50 slots per week among seven Medicaid waiver programs.

McCoy said the department plans to use the $6 million to help people on the waiting lists, but might not spend all of it this fiscal year. That's similar to what has happened in the past when legislators have appropriated money to pare such lists, she said.

Lauer said McCoy's statement Tuesday was different from what a DHS administrator told patient advocates Nov. 14. In that meeting, he said, the administrator indicated much of the money would not be spent on clearing the waiting lists.

Tammy Nyden of Iowa City, whose 12-year-old son has been on one of the lists for two years, said the special Medicaid programs pay for crucial services that many other types of insurance don't cover. For some people with mental illness, the support services help prevent a spiral that can end in suicide. "It's a matter of life or death," she said.

Nyden is chairwoman of a statewide children's mental-health committee of the National Alliance on Mental Illness. The group is planning a Statehouse rally at 12:30 p.m. Wednesday to alert the public about the situation. "I truly believe in my heart that if most Iowans understood this situation, they'd be outraged," she said. Like the others waiting for services, she said, her son is a good person who desperately needs help.

Two legislators who help oversee healthcare spending said they were glad to hear the department intends to spend the money to pare the waiting lists. "I guess the question is, why the delay?" said Rep. Lisa Heddens, an Ames Democrat. She said part of the problem could be that the department has cut staff members who help run the programs.

Heddens and Rep. Dave Heaton, R-Mount Pleasant, expressed frustration that state administrators were slow to respond to their questions about why the waiting lists were not being trimmed. Heaton said he had worried that the department planned to use some of the money for other purposes, such as to help plug a financial hole in the general Medicaid program.

Branstad spokeswoman Greta Johnson expressed confidence in the department's approach. "Gov. Branstad is committed to ensuring waiver waiting lists are reduced responsibly and with a priority on the best outcomes for the patients to be served by the waivers and the taxpayers who fund the services," she wrote in an email to the Register. "Gov. Branstad trusts the Iowa Department of Human Services will ensure waiver waiting lists are reduced conscientiously for patients, providers and taxpayers."

No one is predicting the $6 million will make the waiting lists disappear. Lauer, the brain-injury patient advocate, estimated last spring that it would cost the state $22 million to clear the waiting lists, which included about 8,000 people at the time. He noted that the federal government would more than match the state contribution to the special Medicaid programs.

Heddens said lawmakers should continue to work on the issue. "We need to have a mechanism so people don't have to wait two years," she said.