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One consequence of having a child with a developmental disability is that routine life changes require meticulous advance planning. So, when Missy Joyce's son turned 3, she and her husband began to worry about kindergarten for Hunter, who has cerebral palsy, even though school was years away.
"We started talking to other parents and asking, 'Wow, what's it like to go to school?' " Joyce said. "I had a friend who had gone to training with Arkansas Support Network, and she said, 'You really need to look at their training schedule and attend their IEP trainings.' "
Although schools are required to meet the needs of children with disabilities under the federal Individuals with Disabilities Education Act, or IDEA, it's no simple task to interpret an IEP, the "individualized education plan" that specifies a unique path for a disabled child to follow in school. This is where Arkansas Support Network steps in to educate parents: "What an IEP is, what IDEA says, what your rights are, what you can ask for — kind of all the ins and outs," Joyce explained.
The training is part of ASN's family support program, which also advocates for developmentally disabled kids in school, provides small cash stipends to some families, and coaches parents through the demands of raising children with special needs. The program serves 1,500 families in Northwest Arkansas and includes dedicated outreach staff for the area's growing Latino and Marshallese populations.
Keith Vire, who has been ASN's executive director since 1991, explained that the goal is to keep kids in their communities and out of institutions.
"Family support is a service model that says we want to encourage families to keep their children in the home instead of out-of-home placements, and that we believe parents are the experts about their children. They know what their family needs," Vire said. "In 1988, this program was founded by five moms with young children who had significant disabilities. They looked around at the landscape of what adults with disabilities were getting and said, 'We want something different for our kids when they grow up.' " Those five mothers obtained a grant from the Arkansas Department of Human Services to start a family support program — "the first one in the state and, sadly, pretty much still the only one."
Over the past 25 years, ASN has grown into an organization that does far more than the family support program. The majority of its staff of approximately 800 provides "community living services" — direct, in-home care for adults with developmental disabilities. It operates Kids Club, a nine-week summer camp for disabled children, and trains foster parents who care for special needs kids. ASN also delivers a range of vocational programs for disabled people: supported employment; a school-to-work transition program for high school kids; a drop-in center that includes art and literacy classes, and Workbridge NWA, an intensive, 70-day job training and placement program with an associated retail store work site. In addition to donations, the nonprofit is always looking for volunteers in Northwest Arkansas to help with everything from staffing fundraising events to working with developmentally disabled adults at the drop-in center. (For Central Arkansas residents looking for similar volunteer opportunities, Vire suggested Independent Case Management Inc. or United Cerebral Palsy of Arkansas, both in Little Rock.)
"I'm really proud that we've never turned anyone away," Vire said. "Ever. Regardless of the severity of the disability, regardless of the behavioral reputation they come with. We've served people who were dismissed from institutions because they were too difficult to serve."
The mission statement of ASN is to "recognize and support every person's right to be included in the life of the community." A few decades ago, people born with developmental disabilities were very likely destined for an institutional setting, shut away from most of society. Today, though institutionalization is still commonplace, organizations like ASN have provided families with home- and community-based alternatives (which are usually much cheaper than institutional care). ASN also advocates for policies at the state level that will ensure those options are extended to all Arkansans with disabilities.
"It's one thing for a provider to take care of the people they serve, but it's another thing for them to step out and make the changes that need to happen," Missy Joyce said. "They're providing people with disabilities with opportunities to make their own decisions and have greater control of their lives." That's what led her to join the board of ASN four years ago, over half of which is composed of people with disabilities or their parents; this year, Joyce is the chair.
"I think once you've found an organization that you believe in and that helps as many people as ASN does, it's kind of your job to be involved and help where you can," she said.
To Vire, putting developmentally disabled people and their families in charge of their own futures is his life's work. "One of our founding mothers coined the phrase 'ordinary families in extraordinary circumstances,' " he said. "The idea is that we'll do whatever it takes to help families support their children."
For more information or to donate, visit supports.org or call ASN's main office at 479-927-4100.
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