Program empowers parents of children with disabilities

From a University of Vermont news release:

When Stephanie Deffinbaugh's five-year-old daughter Kristyn was diagnosed with severe dyslexia, the North Carolina parent felt a wave of relief that her child's inability to recognize letters wasn't due to laziness or bad parenting.

The feeling was short lived. After four years of confrontation with her local school district, which refused to provide services for dyslexic students, Deffinbaugh finally sought refuge at the Exceptional Children's Assistance Center, the state's federally funded parent center. There, a parent educator guided her through the complex world of special education law, helping her understand her daughter's rights.

"School administrators don't fear angry parents," says Deffinbaugh, who, armed with new information and a new attitude, was able to obtain the services Kristyn was due. "They fear knowledgeable, positive ones."

That insight is at the core of a U.S. Department of Education-funded program called Parents as Collaborative Leaders, developed by Katharine Shepherd and Susan Hasazi, faculty members in the University of Vermont's College of Education and Social Services, and Paula Goldberg of the PACER Center in Minneapolis, which is earning national notice.

The program — the product of a five-year, $900,000 grant that will formally run its course this fall — has turned a cadre of 25 parents of children with disabilities, including Deffinbaugh, into grass roots change agents, helping families in low-income communities around the country become more effective advocates for their special needs children.

It has also become a model program, complete with downloadable teaching materials, that represents the hope of every researcher: its impact promises to live on beyond the grant.

It's ironic that there is a need for a program that puts parents of children with disabilities back into the educational planning process, given the origins of the Individuals with Disabilities Education Act, or IDEA, the landmark legislation that guaranteed all children a "free and appropriate education." The 1975 legislation was the product of a civil rights movement of parent pressure, years in the making.

What crowded parents out, says Shepherd, the principal investigator on the grant, was the rise of the very profession that was designed to help their children.

Prior to 1975 special education was a fledgling field, she says. The discipline has "obviously been a good thing in a lot of ways, but there was such a rapid rise to professionalism, parents tended to get left out."

To many people, including the majority of special educators (Shepherd trains special ed teachers at UVM) that now seems like a mistake.

Parents bring passion, commitment, and in-depth personal knowledge of their child's disability to the table that immeasurably enhance the work of professionals, says Shepherd.

Schools may have backed away from parent involvement for another reason, too: their relationship with families is often fraught.

"When you're the parent of an exceptional child, there's a lot of raw emotion that can be very unpleasant," says Deffinbaugh. "I burned bridges in a lot of areas."

Helping parents learn communications and leadership skills that allow them to tap their emotions, but also transcend them in important ways, is at the heart of Parents as Collaborative Leaders.

The program has two components: an intensive, three-day training, attended both by parents and by the mentor each is assigned, followed by a year long internship the parent and mentor develop together.

The three-day training is packed with information — part of it is a crash course on IDEA — and with exercises that emphasize listening, teamwork, and empathy and build skills such as conflict resolution and meeting management, all designed to move parents from a mindset of confrontation to one of collaboration. The internship places participants in the middle of a professional setting, complete with real life challenges, where they can practice their new skills and deeply absorb all the relevant information.

Perhaps the most significant part of the program is the confidence it builds in participants that they can be leaders.

They come out saying "I'm more assertive and more collaborative," says Shepherd. "I'm less afraid to ask for things, but I have the skills to do it in a more collaborative way."

At the center of the teaching is a counterintuitive lesson: the less parents think only of their own child, "of their own personal beef, of some injustice being done to them or their child," as Shepherd puts it, in favor of a perspective that incorporates the larger issues, the more likely administrators will be to listen.

The experience is especially valuable for the underrepresented and low-income parents for whom the program was designed, Shepherd says.

"It's one thing for a professional parent who may use these same kinds of skills at work to know how to go do it at a school," says Shepherd. "It's a different thing for a parent who hasn't had that experience to know what to do in a school or in another setting."

Parents as Collaborative Leaders is studded with success stories. One alumnus from the Sacramento area, for instance, organized parents to successfully lobby for state legislation that helped mainstream autistic children in California. Another, from Salt Lake City, organized a support group for the Learning Disabilities Association of Utah, later becoming chapter president and bringing an international learning disability conference to the state. And, generally speaking, the tenets and practices of the program have been institutionalized in the organizations — mostly parent centers — that graduates have been affiliated with.

But the most compelling testimony to the program's value and potential lasting impact are the ways in which new organizations are seeing its promise and funding new trainings.

Connie Hawkins, Deffinbaugh's mentor and the executive director of the Exceptional Children's Assistance Center, where she now works, recently received funding from the North Carolina Department of Public Health to create a program modeled on Parents as Collaborative Leaders for families of North Carolina pre-school children with disabilities.

Another alum, Jeannette Christie (pictured), who directs the New York City chapter of the National Association for Parents of Children with Visual Impairments, and her mentor also received funding to clone the program, targeting it to parents of visually handicapped children scattered throughout New York's five boroughs. Shepherd and Hasazi assisted with the initial training, and Christie is now mentoring participants for the internship phase of the project.


Shepherd was recently asked by the National Deaf Blind Project to train 100 parents of children who are deaf and blind in September and has a growing list of other requests.

Then there's the Parents as Collaborative Leaders website4, which houses all the teaching and training materials created for the program. The materials have been downloaded more than 500 times.

Connie Hawkins, who calls Parents as Collaborative Leaders one of the most effective parent education programs she's experienced in 25 years in the field, isn't surprised by all the interest.

"Historically, parent leadership programs have provided mostly content knowledge with little or no skill development," she says. "What's exceptional about this program is that graduates have both the content and the skill to use it."

According to Shepherd, a program like Parents is long overdue, helping counter the learned helplessness special education has unintentionally inculcated in parents over the field's 30-year history.

"We've inadvertently taken away some of the power and expertise that parents have in their relationship with special educators," she says. "This project has helped to bring that sense of empowerment back. When parents feel like, 'Oh I can do this, I'm smart, I have skills, I can talk with these school people,' then suddenly they feel empowered, and when they know that they can also do it in a collaborative way and actually get better results, that's just a good feeling and a win-win."