Kansas family tries to navigate services for a child with multiple disabilities, mental illness

From The Capital-Journal:

Three years ago, Topeka resident Courtney Davis was completing Kansas Army National Guard basic training at Fort Leonard Wood, Mo., when she received a message from her husband, James, that their 7-year-old son Luke was in trouble at school.

Luke, who has autism, attention deficit hyperactivity disorder, bipolar disorder and Tourette’s syndrome, had been prescribed new medication. Davis said an adverse reaction to the drugs caused her son to experience a “psychotic break,” during which he assaulted more than a dozen people at Shaner Elementary and ended up beating his body against a concrete wall at the school.

Through the assistance of the American Red Cross, Davis was on a bus within an hour and heading to Topeka to tend to her son, who had been expelled from the school.

“The teacher said she couldn't handle his fidgeting, noises, throwing things,” Davis said, adding that she understood the teacher's frustrations. “She had 30 other students in the classroom and Luke. She had no paraprofessional.”

Tim Gorton, director of quality improvement and director of targeted case management at Sheltered Living Inc., said Luke and another 25 percent of his clients have a developmental disability coupled with a mental illness.

Davis and Gorton said finding educational and community services that meet the needs of a child with both intellectual disabilities and mental illness can be a long, bumpy road.

Davis said Luke — now 11 — was diagnosed with autism at age 2. She erroneously was told he would never walk, talk or be potty-trained. By the time he was 3, Luke was enrolled at Colorado Elementary School in Holton, where his individual education plan focused on speech development.

In 2006, when Luke was 6, the family moved to Topeka, in part to try to find more comprehensive services for the youngster. It also was that year that a University of Kansas Medical Center psychiatrist added ADHD and bipolar disorder to Luke's diagnoses.

"We've tried about 60 medications since then to control his disorders," she said.

Luke received mental health counseling from the KU Medical Center psychiatrist for about seven months before transportation costs and lost time at work took its toll on the family's budget. The youngster then started seeing a counselor at Family Service and Guidance Center in Topeka.

After their move to Topeka, Davis said she enrolled Luke at Lowman Hill Elementary, where he was mainstreamed and soon started fighting with other children. He was transferred to Shaner and later expelled because of his violent behavior after the adverse reaction to his new medications.

He was admitted for three weeks to Marillac, an acute treatment facility for children in Kansas City, Kan. That was followed by a 10-month stay from February 2008 to December 2008 at Lakemary Center in Paola, a year-round residential school for children with special needs.

After making academic and behavioral gains, Lakemary staff recommended Luke return to his parents' home.

Today, Luke is enrolled at Hope Street Elementary, where he is in a classroom with one teacher and two paraprofessionals and receives group counseling from Family Service and Guidance Center staff. He is taking three medications — Adderall XR, Seroquel XR and Zoloft.

Davis said Luke still demonstrates aggressive behavior at times. He occasionally becomes jealous of the attention his 6-year-old brother, Gabriel, known as Gubby, receives from his mother.

"He sees his little brother as a threat," Davis said.

In the past, Luke has tried to set his bedroom on fire when Gubby was in the room. He also has tried to throw Gubby out an upstairs window. Davis said Luke's behavior toward his brother has improved since those incidents.

Two attendant care providers from Life Patterns, a not-for-profit organization in Topeka that assists individuals with disabilities, work with Luke in his home, teaching him daily living and social skills that will allow him to operate more independently. Tynley, an autism service dog that helps calm Luke when he gets upset, accompanies him to school and stays by his side at home.

A Medicaid/medical card pays a portion of the cost of Luke's group therapy sessions, while the Kansas Home and Community Based Services Mental Retardation Developmental Disability waiver program helps pay for the attendant care providers. The medical card also helps cover the fees for a therapist who sees Luke in his home.

Davis recently graduated from Washburn University with a degree in social work. She is unemployed. Her husband, a Kansas Army National Guardsman who was injured while serving in Iraq, also is unemployed.

Stephanie Vietor, program coordinator at Hope Street Elementary, said the 19 students enrolled in kindergarten through the fifth grade at the school have significant difficulties with self-regulation, uneven academic skill development and poor time management and organizational skills. They exhibit behaviors that make it difficult for them to do well in traditional educational settings.

“Hope Street is considered the most restrictive setting because there are no typically developing peers here,” Vietor said.

All of the students at Hope Street were referred by an IEP team because the general education setting didn’t have enough resources to meet the child’s needs or staff weren’t able to find a teaching method that resulted in the child’s success, she said.

A classroom at Hope Street will have from five to seven students and be staffed by one teacher and two paraprofessionals. While academics are important, Vietor said the main goal is to stabilize the child’s inappropriate behavior so he can return to a regular classroom.

Hope Street uses a system of rewards and reinforcements to increase a child’s positive behaviors, such as following the teacher’s directions or not touching another child without his permission.

Over time, Vietor said, the complexity of the social skills being learned increase and the child is eventually weaned off the intensive rewards and reinforcements because it is unlikely that system will be replicated in a regular classroom setting.

Many of the children participate in a daily in-house psycho-social group led by Family Service and Guidance Center staff. Hope Street has a social worker on staff, as well.

Vietor said teachers and administrators collaborate with the medical and therapy teams at Family Service and Guidance Center and other community providers. The school also has an open-door policy in regard to communicating with parents.

Tom Bartlett, director of clinical training and continuing education at Family Service and Guidance Center, said it is important that children with developmental disabilities and mental health conditions be diagnosed as early as possible.

“The sooner we are able to diagnose, the better the results,” he said. “An untreated condition will cause the most difficulties in life.”

Vietor said students leaving Hope Street Elementary either advance to a general education middle school or enter Capital City School, a special purpose school serving grades 6-12. The IEP teams from Hope Street and the new school share information that might help with the student’s transition.

“The majority of the students who will be making a middle school transition this year are transitioning into general education settings,” she said.

Next fall, Luke will begin classes at Landon Middle School. Luke already has toured the building, and a student there has videotaped the daily routine at the school to give Luke an idea of what he will be doing next year. The student also will be Luke’s buddy next fall to help him master his locker, organize his books and avoid bullying by peers.

But Davis is worried her son won’t be able to adapt to the noisy hallways and less-structured classrooms. Not every student with multiple diagnoses can cope with being mainstreamed, she said.

Davis said she and her husband are talking about moving to a school district that would have a self-contained classroom available to Luke.

Bartlett said mainstreaming was a well-intentioned idea that has been distorted by bureaucracy and rules that attempt to guarantee no child will be left behind while making it more difficult to design an individual treatment plan for students.

“It’s more for our need than it is for the child,” he said.

Vietor said the bottom line is “we want kids in the least restrictive environment that makes sense for them.”

However, state budget cuts may affect what services youngsters like Luke and their families have available to them in the future.

“The reduction in state funding for mental health services will have a direct impact on many of our kids,” Vietor said.

Gorton, of Sheltered Living Inc., said budget cuts have reduced staff at many community agencies, which means the amount of follow-up done with clients has been reduced. Sheltered Living alone provides residential, day and case management services to more than 250 adults and children with intellectual disabilities.

Gorton said respite care services for families with children with developmental disabilities or mental illnesses already have been eliminated, and he is concerned about Gov. Sam Brownback's proposal to drop $10 million in funding to community mental health centers.

The outcome looks bleaker when cuts to mental health services are added to the reduction in state funding to schools.

“It means more kids in the classrooms and less support,” he said, “and kids like Luke will fall through the cracks."