Serving Urban Students With Autism: Newark, New Jersey

[Ed. note: We are pleased to welcome to the blog Michael Poreda, a 3^rd year student here at Seton Hall Law and the  Executive Director of its Urban Education Law and Policy Initiative (UELPI)--a student organization formed to promote awareness of, dialogue about, and activism benefiting urban education.  On April 5, 2010, UELPI will be convening a panel to discuss the challenges of administering special services to students with autism in urban communities.]

I recently sat down with Leslie Long and Michele Adubato of Newark’s North Ward Center to discuss the issue of autism services in Newark.  Founded in 1970, the North Ward Center is a non-profit community development organization that delivers social services to low-income families in Newark and Essex County through five institutions.  In 2011, the Autism Center will become the sixth institution.  The Autism Center will be headed by Michele Adubato, a former special education teacher and school administrator who has worked with children with autism for many years.   Leslie Long comes from a background of public policy.  She has directed programs for people with developmental disabilities throughout New Jersey.

I went to speak with Adubato and Long after finding that New Jersey has the highest autism rates in the country, yet the reported rates of autism in Essex County are lower than in surrounding communities and lower than the state average.[1] I wanted to know if students with autism in Newark were getting the same services as students elsewhere in the New Jersey, and if not, whether law or policy played a role in the disparity.

Adubato is disturbed by the Newark school system’s proclivity not to diagnose children with autism because of a policy against stigmatization.  Adubato says the key with autism is early intervention.  The stigma-avoiding “wait-and-see” approach that the Newark school system often takes with children exhibiting autism-like behaviors avoids early intervention.

The problems facing children with autism in Newark are many.  At basic level, many parents are simply unaware of the symptoms of autism, the services available, the prognoses, or their rights.  Even when a parent is concerned about a child’s development, the parent may find the public schools resist diagnosis and the entitlement to special services that comes with the diagnosis.  Furthermore, in Adubato’s experience, the schools in Newark are not delivering the same caliber of services that are delivered in some suburban schools.  Even if a parent does get a diagnosis and some services, parents are unaware of their legal rights concerning the schools system’s proposed special education plan for the disabled student.  It is common for schools to select achievement goals for students with autism that do not actually address the most pressing issues of self-expression.  Parents are often unaware that they have a right to refuse the school’s proposed Individualized Education Plan (IEP) and to demand what they deem an appropriate IEP.

The transition into adulthood poses another major legal problem for students with autism.  Special services are only available through the school system up to age twenty-one.  Afterwards, the state administers services to people with autism through the Department of Developmental Disabilities (DDD).  Getting an approval for services can be downright treacherous.  Ms. Adubato related one frustrating story of a grandmother who was told that her autistic grandson needed to write his own application for special services.  DDD then used the grandson’s ability to write an application for special services as evidence that he wasn’t entitled to special services.

When it is inaugurated, the Autism Center will become a “one stop shop” for people with autism.  It will be a charter school for children with autism and provide parents with legal guidance for navigating the confusing bureaucratic world of special services.

On April 5, 2010 at 4pm, UELPI will host “Serving Urban Students With Autism: Newark, New Jersey,” a panel discussion at Seton Hall University School of Law.  We plan to bring together an educator, a parent, a lawmaker, a lawyer, and a member of an urban board of education to discuss the challenges of delivering services to students with autism in urban communities.  Kim Williams will share the challenges she faced as the parent of a student (now an adult) with autism who passed through the Newark public schools.  Michele Adubato will discuss why she left Newark schools after years of service there to found a special autism charter school.  Assemblywoman Grace Spencer will comment on the state’s recent efforts to help people with autism, and Attorney Paul Prior will share his perspective on the legal issues facing students with autism.  Suzanne Mack, a long-time member of the Jersey City Board of Education and the parent of an autistic child, will discuss her perspectives on building a large urban autism program.  The panel is tailored to meet the interests of a diverse audience: students, educators, parents, and lawyers all stand to gain important insights from this dialogue.

Be heard. All are welcome to attend, free of charge; reception to follow. Seton Hall Law University School of Law, One Newark Center, Newark, NJ 07102. RSVP at Urbaneducationandpolicy@gmail.com

Autism, Autistic-Like, and Health Insurance Reform

In his post Implementing Reform: Children with Special Health Care Needs, Professor John Jacobi notes that providing “health insurance” to children with special health care needs (”CSHCN”) does not ensure that their needs will be met.  Many private health insurance plans do not cover services such as occupational, physical, or speech therapy for CSHCN.  Private plans frequently limit coverage for such therapies to otherwise healthy children who need therapy to facilitate their recovery from an illness or injury.

Through their power to regulate insurance, states can require private plans to extend coverage for needed therapies to CSHCN.  For example, in legislation passed earlier this year, New Jersey became one of an estimated 15 states to specifically require insurers to provide treatment for individuals with autism.  Children with autism have benefited from a wave of recent legislation — 8 states enacted laws related to autism and insurance coverage in 2009 alone.  Children with other special needs have been largely left behind.  Many go without services; others may be shoehorned into an inappropriate autism diagnosis.  A recent documentary, Autistic-Like, tells the story of parents pressured to accept an autism diagnosis in order to access state-funded services for their son.  While New Jersey’s autism mandate is admirably broad, requiring private insurers to cover occupational, physical, and speech therapy for individuals with “autism or another developmental disability,” other states’ mandates are strictly limited to children on the autism spectrum.

Insurance mandates are attractive to legislators because they are off budget.  They are not, however, without cost.  The Council for Affordable Health Insurance, an insurance industry association, estimates that “an autism mandate increases the cost of health insurance by about 1 percent.”  Mandates like New Jersey’s, which extends beyond autism, could lead to even greater cost increases.  Piecemeal reform that privileges some special needs over others has costs of its own, however, not the least of which are borne by children living with labels that do not fit.