Sue Robinson is director of the Community Programs Office at the Jepson School of Leadership Studies. Professor of leadership studies Gill Robinson Hickman is teaching a "Leading Change" class that's working with Northstar Academy on initiatives that include a Special Needs Forum & Job & Resources Fair at the University of Richmond on Jan. 29-30. Anyone interested in attending the forum can call 747-1003 or visit northstaracademy.net . The class is working with the special- needs school on projects related to political and social change, community awareness and leadership and change within the organization. For more information about the class projects, visit jepson.richmond.edu or e-mail jepson@richmond.edu.
A parent's focus on a child is unwavering. As challenging and complex as the acts and art of parenting are, children with special needs require parents' heightened energy, education and advocacy. Parents of children with autism and its related disabilities are presented with extreme challenges, whether they're facing autism, autism-spectrum disorders, Asperger's Syndrome and others. As the number of children diagnosed with autism and related disorders has risen to 1 in 150 children, voices from the special-needs community are becoming amplified.
Research and best practices are ahead of budget-strapped public-school systems, which are required under the Individuals with Disabilities Education Act to educate all children. As a result, even though parents, school administrators and teachers develop the child's educational plan together, there is often conflict between what parents want for their children and what schools can provide.
The conflict between what is and what should be — a fundamental question of leadership — creates short- and long-term leadership challenges for educators, public policymakers, insurance executives and others.
Public schools have understandable concerns about how they can serve the greater good andand manage a tax-based budget. But society also has concerns about our obligation to educate tomorrow's citizens. All of them. No Child Left Behind is still leaving a great many children behind despite the very best efforts of caring and capable public-school teachers who understand students' special needs and do all they can to serve them. all citizens
At the root of the conflict are fundamental questions about how we as a society define an appropriate education. Schools are required by law to give students the opportunity to make progress, but the law does not require them to educate children to their highest level or maximize their potential. Of course, educating a child to be the best he or she can be is the absolute expectation and fierce desire of every parent. And our most deeply held values hold that every member of our society should have equal opportunity to become a fully participating (or as fully as their abilities allow) member of society.
The reality of autism and autism-spectrum disorders is that early intervention is critical, and it can be expensive, and some of the best-practices treatments are not covered by health insurance. Insurers argue that these treatments are educational interventions rather than treatment as medicine would normally define. Parents and advocates argue that these behavior-modification treatments are addressing the medical realities of a complex spectrum disorder that affects the child's brain. Some autism treatment programs require intensive one-on-one sessions between a child and a therapist and other expensive approaches. So the parents who can afford to provide certain kinds of intervention, treatment and the related educational experiences for their children do so by turning to private schools and programs. They do so at great financial sacrifice. And they constantly seek to expand their knowledge and build deeper community awareness while advocating for equal funding and equal approaches to autism that other illnesses have. The incidence of autism is higher than that of juvenile diabetes and pediatric AIDS — both of which are covered by most private insurance companies, which in turn are regulated by the Commonwealth of Virginia, which can set standards of coverage.
In metro Richmond, a growing and supportive infrastructure of parent advocates, educators, educational consultants, schools, programs and conferences — as well as a body of laws, policies and procedures — exists to support students with special educational needs. We are fortunate to have many fine schools and programs (Northstar Academy, the Faison School for Autism, St. Josepth's Villa and the Dominion School, just to name a few) and ease of access to government agencies and advocacy organizations. Yet it's not enough.
We are on the vanguard of change regarding society's view of a range of special needs. What's ahead on many leadership fronts?
- Watch the insurance lobbyists during the 2010 General Assembly session. Last year, House Bill 1588 went down in committee. It would have had the Commonwealth require the same sort of insurance coverage for autism as exists for other diseases. The bill — in some version or another — will come up again and again. Parents of special-needs children don't take "no" for an answer. And they're not afraid to ask again and again.
- Special-education law is a growing field of specialty. Leadership can come from the legal community, particularly if that community approaches special-needs litigation as the next rung in the struggle for civil rights. This year, William & Mary Law School opened a new Special Education Advocacy Clinic to assist children with special needs and their families with eligibility or Individualized Education Program meetings, discipline matters, mediation, administrative hearings and more. A clinic at the University of Richmond law school also serves this population.
- Watch Anthem Blue Cross and Blue Shield. It insures more Virginians than any other company. Currently, it excludes autism from its coverage portfolio. In a recent Michigan class-action suit, Michigan's Blue Cross settled and agreed to pay for autism therapy. Other Anthem/Blue Cross units in Colorado, Connecticut, Nevada and Wisconsin do cover the disorder.
- Educational leaders and experts will face a fast-changing landscape and continuum of care. As diagnosis of all sorts of special needs becomes more sophisticated, the challenges for educators to develop ways to meet instructional and social needs will grow and grow. Educators will know more about these problems but will also need to learn more about how to offer proper treatment and intervention. Scholarship and best-practices information will become more vital as our medical knowledge becomes greater and we are better able to understand the complexities and the nuances of some of these health challenges.
- Community leaders must anticipate a swelling population of young people with autism, people who are "aging out" of schools and programs and who will be in our community colleges, community centers and functioning as citizens on many different levels of capacity. Some of these young citizens will never be able to live independently; others may need only modest help from community resources.
- The special-needs community is largely unified and cohesive and collegial around their special issues. But to really lead change, all the parents with all the special-needs children might band together in one pointed advocacy effort to produce awareness and change, the kind of change that only political clout and leverage can provide.
