Parents of developmentally disabled Montanans probably left a recent legislative forum with more questions than answers.
Most of the 14 legislative candidates attending the June 17 forum at City College in Billings admitted they didn’t know much about services for folks with disabilities.
To their credit, the candidates came to learn.
They learned there are serious gaps in services to developmentally disabled Montanans and considerable confusion about why those gaps persist.
Questions at the forum sponsored by Disability Rights Montana, ARC Montana and Parents, Let’s Unite for Kids focused on the plight of severely disabled young people who aged out of public schools before their individual education plans were completed. In most states, special education students are funded till age 21, but Montana stops funding K-12 students at their 19th birthday.
Compounding the problem is the inadequacy of services for adults with developmental disabilities. At the forum, it was stated that 866 people are waiting for services and that it can take 15 years to get services.
According to information from the Montana Department of Public Health and Human Services, the waiting list at the end of June was 889 persons with autism or intellectual disabilities.
At the forum, one father said that either he or his wife would have to stop working to stay home with their disabled daughter when she turns 19 and has no services.
Aging out of special ed
Here are the state policies prompting parents’ questions:
Montana cuts off funding for both regular and special education students at the student’s 19th birthday, according to Madalyn Quinlan, chief of staff for Superintendent of Public Instruction Denise Juneau.
Juneau has previously proposed that the state fund 19-year-old students who need another semester or two to complete their high school education, but lawmakers have twice turned down that proposal. Juneau will propose funding for 19-year-olds again to the 2015 Legislature, Quinlan said.
Frank Podobnik, who heads up special education services for the Office of Public Instruction in Helena, noted that local school boards determine the maximum age of attendance and most set the age limit as under 19 on Sept. 10.
Local school districts may enroll regular or special education students over age 19, but they won’t get any additional state or federal aid. Moreover, state law limits how much districts can spend, so increased spending on older students could require a district to spend less on other students.
Billings is among the districts that generally don’t enroll students older than state law requires. Superintendent Terry Bouck supported the 2013 bill that would have funded 19-year-olds.
School District 2 has allowed some students to continue in school past their 19th birthday, but that decision is made on a case-by-case basis, said Judy Povilaitis, Billings director of pupil services.
Waiting years for services
The state could eliminate the adult service wait list by putting more money into Medicaid, said Beth Brenneman, a staff attorney for Disabilities Rights Montana. Community-based services, such as group homes, personal care, vocational training and supported employment, are mostly covered by a federal block grant or Medicaid. Montana pays about a third of the Medicaid cost with the federal government paying the rest.
However, the state pays the full cost of running the Montana Developmental Center in Boulder, an institution that cares for people with developmental disabilities. Medicaid community services assist about 2,600 developmentally disabled people annually while MDC cares for fewer than 60.
If the nearly $15 million a year the state is spent on MDC in recent years had been used for Medicaid, it would generate about $30 million in federal matching funds. That would have gone a long way toward serving Montanans on the wait list.
Some states have laws that prohibit wait lists for serving developmentally disabled persons, said Mary Caferro, director of Arc Montana and a state senator from Helena.
All disabled Montanans should have access to educational and supportive services that help them reach their full potential to live with dignity. Yet our state has failed many of these folks.
The Montana Legislature has a critical role. Gov. Steve Bullock, who is preparing his budget, should take note, too.
Montana can do a better job of caring for its vulnerable, disabled residents – in public schools and after schooling is completed. The state should be allocating the money it already spends more effectively to maximize services to people with disabilities.
What are Montana’s leaders going to do? We promise to keep reminding them about the parents who dread the end of schooling and years of waiting.