COSAC Government Watch • Current Policy Initiatives

Current New Jersey Autism Policy Initiatives:

Roberts and Prieto Ask State Health Chief Whether Breakthrough Can Help NJ Detect Autism Earlier

(TRENTON) – Assembly Speaker Joseph J. Roberts, Jr. and Assemblyman Vincent Prieto today sent a letter to the state health commissioner asking whether a new breakthrough could help New Jersey diagnose and treat autism earlier.

A new study found unique brain wave patterns spotted for the first time in autistic children may explain why they have trouble communicating.

Researchers hope the technique could diagnose autism as early as age 1. Doctors typically have been unable to diagnose autism until age 2.

“Studies have repeatedly shown the earlier autism is detected, the more likely treatment can be prescribed to minimize its impacts later in life,” said Roberts (D-Camden) and Prieto (D-Hudson).

Roberts and Prieto noted they’ve been working with autism advocates to amend legislation they’re sponsoring (A-2238) to require insurance companies to cover autism treatments. The changes would ensure early autism screenings are covered by insurance.

New Jersey has the nation’s highest autism rate – one in 94 children, compared to the national average of one in 150. Roberts has championed two legislative packages to raise awareness of autism and strengthen the state’s response to autism disorders.

Roberts asked Commissioner Heather Howard whether the noninvasive technology could be incorporated into the state’s early intervention programs for children who may have autism. They also encouraged the Governor’s Council on Autism to look into this and other research to help identify autism at an early age.

“I look forward to working with you to ensure autistic children in New Jersey are properly diagnosed and receive appropriate treatment as early as possible,” Roberts and Prieto wrote to Howard.

“Self-Directed Support Services for Persons with Developmental Disabilities Rights Act.”

The Self-directed Rights Act passed the Senate and Assembly.

Senate Bill 1650, “The Self-Directed Support Services for Persons with Developmental Disabilities Rights Act,” introduced by Senator F. Joseph Vitale (D-19th legislative district), adds protections to individuals with developmental disabilities who choose self-directed residential supports through the Division of Developmental Disabilities (DDD). The Assembly version was introduced by Assembly Speaker Joseph J. Roberts Jr., (D-15) Assemblywoman Joan Voss, (D-38) Assemblyman Gary Schaer, (D-36) and Assemblywoman Connie Wagner (D-38).

“I am very grateful for Senator Vitale’s compassionate support and the support of the entire Senate Health, Human and Senior Citizens Committee,” said parent and Autism New Jersey Board member Kathy Moore who testified on behalf of her family. “This legislation will help ensure that adults with developmental disabilities have the same rights under a self-directed support service option as those living in a state facility. Support services that give our loved ones a chance to meet their full potential are essential.”

New Jersey’s Election Results

Click here to view the election results.

Critical Information on State Budget

Governor Corzine recently announced that he is convening a Joint Session of the State Legislature to unveil a new, multi-faceted plan to stimulate New Jersey’s economy. While some broad aspects of the plan have emerged, there has been increased speculation that funding for

existing programs may be reduced or redirected to new initiatives. This may included additional cuts to services provided by the Department of

Human Services, and perhaps the Division of Developmental Disabilities (DDD).

Because so many individuals with autism are affected by DDD’s budget, Autism New Jersey/COSAC is closely monitoring activities in Trenton

as they relate to services for individuals on the autism spectrum, and advocating for those we serve. As events unfold this week, Autism New Jersey’s/COSAC’s public policy team will provide you with updates and recommended action items.

If you have any questions and/or concerns, please contact Autism New Jersey’s/COSAC’s Department of Public Policy and Systems Advocacy at 609-883-8100 ext. 24 or 48.

Second Pacakage of Autism Bills Proposed

NJ Assembly leaders have proposed a second package of bills to support New
Jersey residents affected by autism spectrum disorders (ASDs). The six
bills establish a further commitment to individuals with ASDs in New

Last year, the Legislature and Governor Jon Corzine identified
autism as a primary health concern for New Jersey. In September, Governor
Corzine approved New Jersey’s most comprehensive autism-related
legislation ever, including establishing a task force for adults with
autism, mandating childhood screening and dedicating millions of dollars
to autism research.

A second wave of autism legislation has been proposed in the New Jersey General Assembly and Senate. The bills

Parents Urge Passage of Bill to Require Autism Coverage: Insurers Would Pay for Treatment

A busload of Loudoun County parents traveled to Richmond on Monday to speak before a state panel considering a bill that would require health insurers to cover treatment for children with autism.

Some brought their autistic children to the hearing, which lasted five hours and featured testimony from parents across the state as well as insurance industry lobbyists.

House Bill 1588 would require insurers to provide up to $36,000 a year per child for autism treatments, including an intensive and costly therapy program known as applied behavior analysis, or ABA. ABA, which has been approved by the U.S. surgeon general as a treatment for autism, is rarely covered by insurers in Virginia, and parents who choose it often pay thousands of dollars a year in out-of-pocket expenses.

Carol Nunez, a Sterling resident who brought her 6-year-old autistic son, Ethan, to the hearing, said she and her husband, Rick, spent almost $5,000 for therapy services covering potty training.

“ABA came into our home at 8 a.m. in the morning till 8 p.m. at night for four weeks,” she said. “It was successful. He’s now 100 percent potty-trained at home.

“ABA is most effective if applied early,” she added. “Had we had insurance to cover [more treatments], I can’t fathom the changes we would have seen.”

Del. David E. Poisson (D-Loudoun), who sponsored the bill with Del. Robert G. Marshall (R-Prince William), told the state panel that the cost of providing the additional health coverage would be far less than the cost to taxpayers of institutionalizing autistic children who receive insufficient treatment.

“Admittedly, in the near term, mandating this coverage could add slightly to the cost of health insurance in Virginia,” he said. “But whatever the cost, and no one can say for certain what it will be, it pales by comparison with what it will be if we fail to invest now in early intervention services.”

The panel, the Special Advisory Commission on Mandated Health Insurance Benefits, will make a recommendation to the 2009 General Assembly on passing the bill.

Speaking on behalf of the Virginia Chamber of Commerce, Keith Cheatham expressed concern that the legislation would lead to higher insurance premiums.

Doug Gray, a lobbyist for Virginia health insurance companies, questioned whether therapy treatments for autistic children should be considered medical or educational services.

“ABA is described as an education service by federal law,” he said. “Many borderline health-care services are not covered by health insurance. For example, if a kid with [attention-deficit hyperactivity disorder] needs a tutor or a special school, it would be provided by educators.”

Poisson, responding to Gray’s comment, said that the ABA program “originates with a medical diagnosis, and only an MD can make that determination. ABA is a necessary medical treatment.”

Casandra Oldham of Leesburg cried as she told the delegates about her sons Gareth and Korlan, ages 4 and 2, who have been diagnosed with autism.

She said she and her husband, Bill, have seen improvement in their sons through the ABA program but cannot afford to pay for the amount of therapy the boys need. Providing both sons with 40 hours of therapy a week would cost the family nearly $14,000 a month, she said.

“I’ve been put in a position that no mother should ever be put in,” Oldham said. “When I found out that baby Korlan was also autistic, I had to decide: Should I give one more therapy than the other? Or should I give them both equal amounts, but less?”

Having run out of savings, the Oldhams are raising money through yard sales, bake sales and car washing, she said.

New Jersey Adults wth Autism Task Force Established and Appointing Members

The State of New Jersey has established an Adults with Autism Task Force to study and
evaluate the needs of adults with autism in New Jersey, and develop recommendations relating to job training and placement,
housing and long-term care. The recommendations of the Task Force will comprise the basis for a comprehensive plan for meeting the
needs of adults with autism. The Task Force will report its findings and recommendations
to the Governor and Legislature within 12 months of the group beginning its work. COSAC’s Director of Public Policy and Systems
Advocacy, Leslie Long, is an appointed member of the group. For more information on the Task Force and its apponted members,

click here

and navigate down the page
to the listing for “New Jersey Adults with Autism Task Force.”

Current Federal Autism Policy Initiatives:

President Elect Barack Obama

The candidate for President of the United States, campaigning on Hope and Change, is now President Elect Barack Obama. The election is over and the autism community can reflect on campaign promises to better serve people with autism spectrum disorders (ASDs) that were highlighted in Autism New Jersey’s previous communications. This is a time in which advocates can work together to support public policy on a federal and state level to advance reasearch and support for all people on the autism spectrum.

Change is imminent and the time is now. Please watch for updates through Autism New Jersey’s Action Alerts, newsletter updates and e-mail alerts. Autism New Jersey is ready to work for you in researching government policies to make them transparent for you, our constiuents, and calling upon you when we need your voice. We are proud to serve you during the government’s transition period. Thank you for your support. We look forward to working with you.

Click here to read more about President Elect Barack Obama’s position on issues facing individuals with disabilities.

COSAC Supports The Helping Hands Autism Act of 2008, New Autism Legislation Announced by U.S. Senator Robert Menendez

Ewing, NJ: Members of the New Jersey Center for Outreach and Services for the Autism Community (COSAC) attended a press conference today and applauded U.S. Senator Robert Menendez’s (D-NJ) announcement of a new plan to support families affected by autism spectrum disorders (ASDs). The Helping Hands Autism Act of 2008 aims to increase Housing, Awareness and Navigation Demonstration Services (HANDS) for individuals with ASDs. It is expected to combine guidance for families seeking ASD services and care, awareness training for first responders and a task force on housing for adults with autism. New Jersey, where 1 in 94 children is diagnosed with an ASD, has the highest rate of autism in the nation. Today’s event was held at the Theodore Roosevelt No. 5 Elementary School in Weehawken, NJ, and follows several pieces of autism legislation introduced in the past year.

COSAC Executive Director Linda Meyer and Director of Public Policy and Systems Advocacy Leslie Long attended today’s event along with families affected by ASDs, and representatives of Autism Speaks, a national organization. Several people addressed the positive impact this legislation can have on more than 87,000 state residents affected by an ASD.

COSAC thanked Senator Menendez for listening to the needs of New Jersey’s autism community and acknowledging COSAC as a valuable resource for families and professionals who support them. “The Helping Hands for Autism Act marks a great step toward an improved quality of life for individuals affected by autism spectrum disorders,” said Linda Meyer. “The autism community represents both a medical and financial challenge for our communities. As the state’s budget tightens, states need to look for federal partners to help solve difficult problems. Senator Menendez, thank you for working to create a long overdue federal and state partnership to benefit the autism community,” Meyer concluded.

“Nothing is more important to families than to know that their government understands the issues they are facing and to present solutions to aid them,” said Leslie Long, whose department educates families, legislators, employers and the community on the lifelong needs of individuals affected by ASDs. “We believe that Senator Menendez has empowered the autism community through this much needed and very important legislation.”

Click here to read a summary of The Helping Hands Autism Act of 2008.

Proposed Federal Legislation to Establish Disability Savings Act of 2008

U.S. Senator Christopher Dodd (D-CT) has introduced a bill to encourage
individuals with disabilities and their families to save
private funds for disability-related expenses to supplement, not supplant,
benefits provided by other sources (including Medicaid and private
insurance) so that they can maintain health,
independence, and quality of life.

The bill encourages individuals with disabilities and their
families to save personal funds for their unique disability-related needs
in Disability Savings Accounts (DSAs). It is hoped that the establishment of DSAs
will promote the investment of private funds in the long-term well-being of
individuals with disabilities through tax-advantaged savings tools,
including a refundable tax credit for low-income savers, while protecting
the beneficiary’s access to critical public supports.

Click here to learn more about Senator Dodd’s bill.

Expanding the Promise for Individuals with Autism Act of 2007 (EPIAA)

Senator Hillary Rodham Clinton (D-NY) and Senator Wayne Allard (R-CO), have sponsored the Expanding the Promise for Individuals with Autism Act of 2007 (EPIAA). The Act would dramatically expand federal funding for life-long services for
people with autism. The EPIAA would authorize approximately $350 million in new federal funding –
above and beyond all existing federal dollars – for key programs related to treatments, interventions
and services for both children and adults with autism.

The Act would also authorize the establishment of a task force – which will include
significant representation from the autism community – that will report to Congress and the
Executive Branch on the state of evidence-based biomedical and behavioral treatments and services
for both children and adults with autism, including identifying gaps in applied research on such
treatments, interventions and services. It would also mandate a GAO study on service provision and financing.

Click here to read Congress’ findings and the full text of the bill.

Current Judicial Issues of Note:

P&A Files Federal Waiting List Action

New Jersey Protection and Advocacy (NJP&A) has filed a lawsuit against the in Federal District Court against the New Jersey Department
of Human Services alleging it has failed to meet its legal responsibility to provide housing for people who want or need to live outside of
their family homes. The suit alleges that the Department has violated the Americans with Disabilities Act and Federal Medicaid Law in its use
of waiting lists, and its failure to: provide prompt services, assess the needs of individuals on waiting lists, provide services to wait-listed
individuals, inform individuals of their right to choose integrated, less restrictive services, and properly use Medicaid Home and Community-based
Waivers for qualified individuals who are seeking less restrictive services.

NJP&A partnered with the private law firm of Lowenstein Sandler in drafting and filing the action.
Several individuals, who were named anonymously, along with The New Jersey Association of Community
Providers, The American Association on Intellectual and Developmental Disabilities, and The Alliance for the Betterment
of Citizens with Disabilities, were named as interested parties. Click here to read the complaint in pdf format.