Helping disabled toddlers

In small room on the east end of the District IV Human Resources Development Council building, Laura Bleak is helping a 6-year-old boy improve his motor skills.

Using building blocks, a scooter and inflatable balls, Bleak uses a number of physical tasks to help the boy build cognitive learning skills and muscle coordination.

Bleak is an occupational therapist for Havre Public Schools and Quality of Life Concepts Inc., a private, nonprofit organization that provides home-based services for children with developmental disabilities and their families. The organization, which occupies several offices in the HRDC building, serves about 50 children ranging up to 18 years of age said Kathy Leeds, a family support specialist for Quality of Life.

The organization is designed to foster the needs of developmentally disabled children through therapy and education. The nonprofit helps children and families from nine counties in north-central Montana and is state-funded. The organization's main office is in Great Falls, while the Havre office covers Hill, Liberty, Blaine and Chouteau counties.

The services provided by the organization have been invaluable, said Dottie Wilson, whose 5-year-old daughter, Keeley, has a rare genetic disorder called Williams syndrome. The syndrome delays the development of cognitive and physical functions. It occurs in about one of every 20,000 births.

"Quality of Life has been incredible," Wilson said. "They've been an absolute lifesaver for us. When Keely was diagnosed with Williams syndrome, we just didn't know where to go. Keely's pediatrician suggested Quality of Life, and they've just done so much for us."

Keely Wilson has had to undergo more than 25 surgeries to treat her disability. She has between 15 and 20 medical appointments a month. Quality of Life has provided speech and occupational therapy to complement her other treatments, Wilson said. The organization has also provided equipment for Keeley to use in their home as part of her therapy, she added.

The therapy has proven to be very effective, Wilson said.

"Everything the doctors said she'd never do, she's proved them wrong," Wilson said. "They're amazed."

Other than the children's families and school-based services, Quality of Life Concepts is one of the few resources available to children with developmental disabilities, Leeds said, adding that the children the organization serves have a wide range of disabilities, from severe handicaps to minor learning problems. In this case, the child Bleak was working with had a very mild disability.

"Some kids have a sensory disorder - a problem with where they are in space, or movement in general," Leeds said.

Things that don't bother most people - like bright lights or multiple sources of sound - can cause great distress to a child with a sensory disorder, she said. While severe handicaps almost virtually never go undiagnosed, those children with mild impairments do not always receive the treatment they need, Leeds said.

"Some parents think it's a behavior problem when it's actually a disability," she said. Because the signs of a minor disability are more difficult to recognize, parents and even some teachers are not aware that a child has one.

The easiest disability to recognize is speech impairment, said Kim Kaftan, a speech therapist who works for Havre Public Schools. Kaftan works part time for the school district, helping 3- to 5-year-olds develop better communication skills.

The job is one Kaftan finds rewarding.

"Having the ability to communicate is a life skill. It's important and practical," she said.

Quality of Life Concepts is faced with a massive task - working with parents and other organizations to provide critical therapy and services to developmentally disabled children.

That includes visiting children in their homes, hiring speech and occupational therapists, providing parents and teachers with information about disabilities, and attending continuing education courses.

Until disabled children turn 18, only a small percentage are eligible for Social Security, Leeds said. The number of group homes available for developmentally disabled children is much lower than the number available for adults, she said.

For instance, in Montana, only two such homes are in operation, serving fewer than 15 children statewide, she said. In contrast, there are six group homes for adults in Havre alone, serving more than 40 people. That means that the vast majority of children with disabilities live with their parents, Leeds said.

"You can't just say 'I can't handle this, the state needs to take over,'" she said. "The family has to figure out how to meet the child's needs. That's where we come in."

Leeds, along with Patrick Mader, Vicki Pheiffer and Ingrid Cartwright, work with families to determine what services and therapy will benefit a child with special needs. Children over age 5 are often eligible for services through the school district, but finding help for younger children can be difficult.

Finding a qualified therapist willing to travel to Havre can be tricky, but Leeds maintains that doing so is essential.

"It's cheaper to work with them early on than it is to wait until you have huge problems later in life," she said.

In addition to more traditional therapeutic services, some children receive less conventional methods of therapy. Several involve horses.

The Hi-Line Therapeutic Riding Association uses horseback riding to provide therapy to children with disabilities. The natural rhythm, variation and repetition of the horse's movement creates movement in the rider's body that is similar to natural walking motions. This motion can help with muscular stimulation and development. The therapy can help with balance, posture and mobility.

Another program, Personal Ponies, offers developmentally disabled children the opportunity to befriend miniature Shetland ponies. The program operates on the principle that children discouraged about their progress can benefit from the companionship of a small equine.

Leeds runs the program. Keeley Wilson is one of the children who have benefited from Personal Ponies, her mother said.

"She has a miniature horse named Blue, who stays out at Kathy's and we go out there and visit it," Dottie Wilson said. "Keeley has definitely bonded with it. She can't ride it, but they go on long walks together and Blue follows her around like a puppy. They have a great relationship."

Ultimately, the most important aspect of a child's care rests with their families, Leeds said. Parents need to be aware of their children's disabilities and what services are available, she added.

The concept of shifting responsibility to the families of developmentally disabled children is relatively new, Leeds said. Until the 1970s, nearly all developmentally disabled people lived in institutions. In 1974, President Richard Nixon issued an executive order for many of the country's 200,000 disabled people to be integrated into society.

"When I was a kid, there were no individuals with disabilities in school, or even in the community for that matter," Leeds said. "People's level of awareness and understanding has grown since then."

Studies have shown conclusively that those students of normal learning levels who interact regularly with developmentally disabled peers tend to be more compassionate as people, Leeds said. One local program that integrates young children of all learning levels together has met with great success, she said.

By law, all kids between 3 and 5 who have been identified as having learning disabilities are entitled to school-based services. Havre Public Schools formerly offered the services at a school district building. Under a new cooperative agreement with Head Start, special education teacher Chris Maristuen works with kids with special needs in a classroom at the HRDC building where they interact with peers who work at normal learning levels.

"I think it's been tremendously successful," said HPS Superintendent Kirk Miller.

Like many other organizations, Quality of Life has its funding woes. The organization is state-funded, though Leeds admits that in the future, it may be reliant on grant money.

"We're in the process of hiring a grant writer. Our program was nearly cut by the Legislature this year," she said. "On the last day of the session they put us back on, but I think it's only a matter of time until we're on the list to get cut again."

If the funding is cut, the families will have to bear the financial burden of paying for early intervention services.

"To cut our services would devastate families who have to meet those needs," she said.

Wilson agreed. "We were devastated when we heard they were thinking about it, and we will be devastated if that ever happens," she said. "If we didn't have (Quality of Life), I don't know what we would do."

Leeds said it is important for people to remember that the time when the developmentally disabled were housed in institutions is in the not-too-distant past.

"If our state doesn't view individuals with disabilities as important people in our society, it's going to go back to that at some point."

Quality of Life is funded through a federal mandate that requires all states to provide services to infants and toddlers who are developmentally delayed or have a condition that will result in a disability. These early-intervention programs served more than 230,000 U.S. children and their families last year.

Between July 2000, and September 2001, the last period for which figures are available, Montana spent more than $2 million on early-intervention programs, assisting 1,269 children and their families.

According to a state survey, 94 percent of those who received services rated the quality of service as either "high" (29 percent) or "very high" (65 percent).

Those with questions about the services available to developmentally disabled children can call Quality of Life at 265-2620.

On the Web: http://www.personalponies.com