Double The Need

Mieke Bouwman has bounced in the past two months from a catatonic state to rage so uncontrollable she pulled fistfuls of her hair out of her head.

The 23-year-old Fayetteville woman has lived her life with a developmental disability, so adversity isn't new. The erratic behavior is.

She cries in agony one moment and asks her mother to make the pain go away. A few minutes later, she is angry no one is helping her. Then her mood shifts again and she's ready to go for a walk and smiles as a photographer snaps her picture.

Bouwman has Prader-Willi Syndrome, a genetic condition affecting growth and appetite. Most people with the syndrome have mild to moderate intellectual impairment and learning disabilities and some level of behavioral problems. Prader-Willi effects the way her body metabolizes medication, and pills stay in her system a prolonged time.

A change in medication spun Bouwman out of control, and she needs help. The problem is finding a place to treat a developmentally disabled adult with acute mental health issues, and, some way to pay for it.

State officials said they're working on some new programs that would help Bouwman and others like her, but they don't know when they might be ready.

Hospital Quandary

The help Bouwman needs isn't available in Northwest Arkansas, said Linda Pullen-Brewer, her mother and legal guardian.

Bouwman was admitted three times in the past two months to the psychiatric unit at Northwest Medical Center-Springdale and released within a week each time. Doctors are able to modify her medication and pull her out of her psychotic state, but Pullen-Brewer said her daughter quickly slips back into an abnormal mental state.

Cris Arias, director of psychiatric services at Northwest Medical Center, said the unit can't keep a patient who isn't showing acute symptoms.

"If the conditions a patient comes in with get better, they are released with a plan for follow-up care," she said. "It can be frustrating for everybody."

The Northwest unit is designed to treat acute conditions, and while some patients stay for an extended amount of time, most average six days, she said.

"We can't warehouse people," she said.

Keith Vire, chief executive officer of Arkansas Support Network, said there is a belief among many in the mental health industry that people with developmental disabilities cannot benefit from cognitive therapy, a type of therapy helping a patient become aware of negative thinking and teaches him how to respond in a more effective way.

"I just don't agree that people with developmental disabilities can't benefit from treatment," he said.

Arias said inpatient treatment at Northwest is very structured and patients must have a certain level of mental capacity to be able to participate in group therapy.

Limited Options

Ken Smith, executive director of the Prader-Willi Syndrome Association USA, said there are very few treatment options for the condition, and most general psychiatric units are ill equipped to deal with people with rare conditions. Prader-Willi occurs in about 1 in every 15,000 people.

"Finding people willing to treat people with developmental disabilities is challenging itself, and this diagnosis makes it that much more difficult," he said.

Only two hospitals nationwide have in-patient Prader-Willi units that will treat adults: The Children's Institute of Pittsburgh (Pa.) and HealthBridge Children's Hospital in Houston.

Bouwman spent five weeks at The Children's Institute of Pittsburgh as a teen following back surgery. Children with Prader-Willi often have severe curvature of the spine that requires surgery. Pullen-Brewer said pain medication didn't mix well with Bouwman's other medication, causing delusions and hallucinations. She was treated for drug-induced psychosis.

Pullen-Brewer is working on getting Bouwman accepted to the Houston hospital. She faxed all her medical records to the special unit and is waiting for approval. She must also convince Medicaid to pay for the Texas treatment, meaning she needs a waiver. Pullen-Brewer must prove the necessary care isn't available in Arkansas and there's no other option.

Rien Bouwman, Mieke Bouwman's father, said his private insurance plan paid for the first four weeks of her time at The Children's Institute of Pittsburgh; Medicaid paid what private insurance wouldn't. The federal program has different rules for paying out-of-state care for children.

Medicaid also only pays for inpatient psychiatric care for people age 22 through 64 if they are in a general hospital setting.

The only Northwest Arkansas mental health beds that qualify for Medicaid money are the 28 beds at Northwest Medical Center and 18 beds at Mercy's Senior Behavioral Health Program in Rogers, which is geared to helping patients 55 and older with psychiatric issues.

The Arkansas State Hospital is another possible option for Bouwman. Human Services runs the state's psychiatric inpatient facility, which has 90 beds dedicated to the adult population. Joy Figarsky, director of the Division of Behavioral Health Services, said the hospital offers some specialized programs for people with disabilities, but there may be a waiting list to get in.

Medicaid Role

Medicaid is a voluntary federal-state partnership program where participating states receive grants for some medical and long-term care for certain people who have limited incomes.

The federal government provides 70 percent of Medicaid funding, and the state kicks in 30 percent, creating a "whole lot of regulation," said Charlie Green, director of the Arkansas Department of Human Services Division of Developmental Disabilities Services.

Each state establishes its own eligibility standards and scope of services while the federal government oversees the program. Services not covered can be paid by the federal government if the state is granted a waiver.

One such waiver pays for the supported living and case management services agencies such as Arkansas Support Network provides. Arkansas Support Network provides assistance to people with disabilities and their families through many programs, including at-home services.

Bouwman lives in her own apartment, but receives around-the-clock assistance through Arkansas Support Network. She has a case worker who helps with issues related to her developmental disability, but Vire said proposals the state is working on would allow his group to have a more hands-on approach to a client's overall health care, including mental health.

"I think we will be able to reduce hospitalizations," Vire said, adding this would lower overall costs. About 85 percent of Arkansas Support Network clients are Medicaid eligible.

Amy Webb, Human Services communications director, said home- and community-based services for people with developmental disabilities are capped at 4,183 participants; there are 2,993 people on a waiting list.

One proposal awaiting federal approval could get everyone on the waiting list covered, Green said. The program will serve Medicaid recipients who may otherwise require care in a nursing home or other long-term care facility, including people who are frail elderly or those who have a developmental or physical disability, Webb said.

"We have to get federal approval for all these populations, and it takes time," he said. Green couldn't say when approval might come.

Coordinated Care

Another program Green said will help streamline the process is health homes that will provide intensive case management services for all types of care including mental and health services.

"Right now we don't have anyone who coordinates all that care," he said, adding that role typically falls to parents of people with developmental disabilities. He said parents can be their child's strongest advocate, but that may not always be the case as parents age and may not always be able to be there.

Figarsky has been developing the sate's health home model for Medicaid recipients for some time. She hopes to submit the program for federal approval and to state legislators in the next few weeks.

Health homes aren't a physical place, but a program that oversees a patient's entire care. She said the current system is fragmented and patients often don't know how or where to get services.

Parents and caretakers don't have that resource yet. Pullen-Brewer is on the phone daily, calling various state agencies and medical facilities trying to navigate a complex system.

"One of the most frustrating things is there are so many different agencies out there, but no one seems to know what is going on with any of the others," she said. "There are so many hoops to jump through."

For now, it's a waiting game for Mieke Bouwman and her family, one Pullen-Brewer hopes to resolve soon.

"I don't know if she can get better on her own," she said. "The goal right now is to keep her safe."