micah rishman foundation
When someone becomes the parent of a child with a disability, there is no chance for preparation. No one asks the parent if she or he would like to take on the coming challenges nor makes an offer of six months for training and education to get ready. It is something that simply happens, says Wilbur Hawke, a special-needs advocate with the Rushman-Micah Angel Foundation (RMAF).
And when it happens, parents need a lifeline because their lives change along with that of their child. “You’re so bewildered and your child has a disability, but you are not the first one, so build on what other parents before you have done,” Hawke says. “You can’t learn it all, so you have to reach out.”
“We want to be that lifeline parents can reach out to,” says Barbara Brown, the co-founder and executive director of RMAF.
In its second year of operation, the collaborative, parent-driven organization serves families in Collier and Lee counties by providing a single-stop resource for all special needs cases, no matter what form of disability might be involved. Its well-researched, comprehensive database of information, education and training provides a guide for navigating the bewildering complexities of the bureaucracy surrounding disability laws.
The non-profit also helps parents obtain adaptive information technology equipment that can assist their child, provides sports and art opportunities, and helps teens make the transition from school into the workforce. The Foundation currently provides all of its services free to parents, despite having very limited funding.
“Disability does not discriminate,” Brown says. “Whether they live in Port Royal or Immokalee, parents still have to struggle to get services for their child.”
The power of information
A click on the “resources” tab of the RMAF website (www.rmaf-fl.com) provides links to more than 60 other online resources about a cross spectrum of special-needs subjects, including a glossary of terms to get a newcomer up to speed with the jargon. The Foundation’s Facebook page contains many more resources.
The need for this sort of central information clearinghouse became apparent at meetings that involved people from different special-needs organizations, according to Joe Cummerow, president of the RMAF board of directors. “You can come to [our] one organization to find out what is available to help you as a parent,” he says. Even those in the field who provided services did not know all the help that was available or which organizations to contact for certain needs.
“Parents don’t realize how much control they can have over the process with schools and with voc-rehab and they feel kind of powerless,” says Becky Newell, a RMAF board member whose son has Down syndrome. But “research and self-education helps you understand the process. When you’re educated in advance, you can be well-prepared but still feel unprepared, still feel overwhelmed, [but I] can’t imagine how overwhelmed it must feel without the research.”
Navigating the school maze
Two federal laws require educational services be provided to children with special needs: Section 504 of the Rehabilitation Act of 1973 and the Individuals with Disabilities Education Act. Different parts of each act cover different age groups.
RMAF collaborates with Hawke, who is the special-needs parent liaison for Collier County Public Schools. His 21 years of experience as a schooling advocate for children with special needs began when his son contracted an illness that resulted in the loss of his hearing. By researching federal laws and learning bureaucratic procedural process, Hawke not only obtained needed educational resources from the local schools for his son but also caused the same resources to be provided to 18 of his son’s peers. Hawke says his and other parents’ efforts have helped to create a model of school-parent collaboration in Collier County that has received recognition as a best-practices program. “Kids here are served in their local schools and for the highest percentage of the day because we were collaborative and proactive,” he says.
The Collier schools model is now being emulated nationally. “It is more productive to be collaborative and proactive than adversarial and reactive. Ongoing conflict and fighting is not how you get services; collaboration is,” Hawke says.
Hawke teaches parents about procedural process. “By understanding rights and knowing what to ask for, the proper procedure to follow, and the correct language in which to frame the inquiry, parents can get support and services from the school system,” he explains.
Obtaining technology
Sometimes the key to academic and life success for a child with special needs is specialized adaptive information technology, an expensive piece of equipment that may be out of reach for families already strapped with the child’s medical expenses. RMAF helps parents obtain this equipment from school systems or donors. Brown founded the charity after her own son Micah needed reading technology equipment for use after school hours. “Families need help knowing their rights and what they are entitled to from the school district,” she says. “Parents are not savvy in knowing what the school system is supposed to do for them.”
For example, Barbara Linstrom, whose 10-year-old daughter has a disability that causes speech difficulties, says, “When it was time for my daughter’s IEP (individualized education program), I wondered if it was the right place to ask about IT.”
Information from RMAF empowered Linstrom to walk into the meeting and advocate for the school to provide her daughter with technology. “I went to the meeting and dropped Barbara Brown’s name and Rushman-Micah and that I knew my daughter was permitted a communication device from school,” she says. “Barb sent me a link to the language I needed for the meeting to put it into the plan to get it, [and] she will take it home to use after school.”
Getting a job
While federal law entitles children with special needs to services while school-aged, those entitlements stop at graduation. Once again, the bureaucracy surrounding vocational-rehabilitation proves confusing for parents. As a licensed vendor for voc-rehab, RMAF helps these teens with getting jobs and making the transition into the workplace with supported employment plans.
Newell, whose 15-year-old son will soon be seeking a job, says she feels RMAF will help teens with special needs find jobs they enjoy because the coalition of parents is so committed to serving the individual. RMAF’s caseload for voc-rehab is also lower than other organizations because it is a recently licensed vendor.
I know how you feel
Hawke’s personal experience reinforces the need for a resource such as RMAF, where parents of children with special needs can turn to people who truly understand the challenges they face. “If I had listened to what others had said, that he’d never read past a third-grade level, my son’s life would have been so bleak,” he says. “He took [Advanced Placement] classes in high school and went to college, has a job, is married and has children.”
Hawke adds, “As much as anyone can say ‘I know how you feel,’ unless you’re a parent of a child with disabilities, you don’t know.”
Laura Tichy-Smith a freelance writer and editor in Fort Myers. She writes a weekly column about charities for the Coastal Life section of The News-Press.