Missouri targets services wait list for the developmentally disabled

JEFFERSON CITY, Mo. -- Hundreds of people who have developmental disabilities could begin receiving publicly funded services as Missouri officials tackle a waiting list for in-home services that stands at nearly 1,400 people.

Gov. Jay Nixon has proposed nearly $24 million for in-home services for people qualifying for Medicaid, which officials estimate would cover 970 people. The potential for additional help is leading to excitement, particularly among those who need the services.

"That sounds wonderful," said Harmeen Chawla, who helps care for her 48-year-old sister, who has a developmental delay and suffers frequent seizures. The sister and their mother moved to Missouri from New York in 2012.

Other states also are confronting demand for services that exceeds their capacities. Maureen Fitzgerald, director of disability rights for The Arc, a Washington, D.C.-based advocacy group for those with intellectual and developmental disabilities, said there could be more than 200,000 people waiting nationwide -- though some states have no waiting list and others number in the thousands.

She said some states have moved to managed care to shrink their lists.

Fitzgerald said wait lists can lead to financial difficulties and strain. Family members sometimes quit jobs or reduce hours to care for loved ones, and people who have disabilities can be left with little to do to occupy their time. Stress for caregivers also can be significant.

Missouri has made progress since launching the Partnership for Hope program in 2010. That combines county, state and federal funds and seeks to end the wait for services and avoid need for institutional placement. The program covers 101 counties and St. Louis and offers services such as transportation, medical equipment, counseling, job preparation and independent living skills.

Nixon said he wants to eliminate waiting lists in every county participating in Partnership for Hope and to provide in-home services statewide for 720 people who are eligible for Medicaid and require more expensive services. It would leave about 500 people waiting whose services cost less than $12,000 per year and whose county does not participate in Partnership for Hope. Mental officials said before 2010 the waiting list of people eligible for Medicaid topped 2,000.

"Our friends and neighbors will now get the life-changing services they need, when they need them," Nixon said.

Rep. Jeff Grisamore said getting within striking distance of eliminating the wait list is a major milestone.

"Individuals with disabilities should receive the first portions of government funding, the highest priority," said Grisamore, R-Lee's Summit.

Time spent on the waiting list can be a significant challenge for families.

A few years ago Ameek Chawla received services five days per week and transportation for no cost while living in New York. That changed when she moved to Missouri with her mother in the summer of 2012 following the unexpected death of her father. Chawla's family is paying for a program three days per week while providing their own transportation. Her sister, Harmeen Chawla, estimated it has cost $13,000 to $14,000 and said it has not included some therapies provided in New York.

Harmeen Chawla said she had a feeling there would be a waiting list but did not expect it would take so long. She said it took about a year to get Ameek on the waiting list where she has been since last summer. Now work schedules are juggled to provide transportation and the family is budgeting itself, limiting how frequently they go out to eat and eschewing vacations. But the services are important and offer their mother a respite while helping to keep her sister active and mentally sharp.

"It's sustainable for a short period of time," Harmeen Chawla said. "But I would not like to see her on the wait list for five years."