Welcome to the Newsroom, created to foster COSAC’s ongoing rapport with the media. If you are a reporter or producer seeking accurate information for a story about autism, as well as New Jersey families affected by autism and the professionals that support them, we can help. COSAC successfully works with national, regional, state and local reporters and producers to address the issues affecting New Jersey’s autism community. This section also is for families affected by autism who are interested in working with the media to tell their stories. To become a COSAC Media Specialist, click here. Thank you in advance for your interest in autism, COSAC and the issues facing New Jersey’s autism community. Contacts Hope Arvanitis, Director, Communications and Marketing Dept. (609)883-8100 x12 [email protected] Jessica Alloway, Coordinator of Communications & Marketing (609)883-8100 x25 [email protected] Although she knew the letter from the state was coming, Elaine Buchsbaum was not prepared for how devastating it would be. Seven years ago, she and her husband put their son Matt’s name on the community housing waiting list for people with developmental disabilities. Earlier this month, the unwelcome news came in the mail from the state Division of Developmental Disabilities. Matt Buchsbaum is number 1,126 on a list of 4,601 people who need a home. When the Buchsbaums last asked the state for their son’s placement number it was 1,327. And that was two years ago. “For me, it’s overwhelming. I don’t see where this is going,” Buchsbaum said. “The answer can’t be there is no service at all.” Buchsbaum, 62, said she sees no progress in the state’s attempt to integrate disabled people into the community, especially if you take into account those who have moved off the list because they either left the state or died. The division said it sent the placement letters this month to keep families more informed in response to complaints the process was bureaucratic and impersonal. Division spokeswoman Pam Ronan said notifying families about their loved ones’ place in line for government-subsidized housing will now be “an annual event.” What the state won’t be able to tell families, however, is how long they will have to wait for a home because funding levels change from year to year. For Stephen Somich, any wait is too long. The 26-year-old man with Down syndrome has a job, a girlfriend, and a strong will to take the next step. He would like to leave his family home in Whippany and live in his own apartment, just like his younger brother did after graduating from college. But the Division of Developmental Disabilities made it clear just how far from ready the state is to help him. He is No. 4,552, according to his father, Steve Somich. Seeing his son’s number forced the elder Somich to consider the cold reality of state economics. Without a steady infusion of government funding to jump-start a nearly dormant placement effort, Stephen Somich might be waiting for his independence until his parents, both age 55, are too old or sick to look after him. “I realized, given where they are with placing people, my son would never get a placement unless something happened to me and my wife,” Somich said flatly. “Emergency” placements, such as when a parent gets sick or dies, drive the movement of nearly 300 people a year. Often they end up in one of the state’s seven “developmental centers.” For many, this is not the inclusive environment and independent life they had longed for. Non-emergency placements, made with dedicated state funds, have dwindled since 2002. Last year, the state dedicated $2.8 million, enough to move about 28 people from the list. The notification letters have been motivating families to redouble their lobbying efforts in Trenton for more funding. The Somich family, father and son, became citizen lobbyists this year, making appearances at legislative hearings to urge lawmakers to find money in the state budget to dedicate to community housing. My son “saw the letter on the table and read it and said, ‘What does this mean?’ I said it means we have to do more lobbying. He said, ‘Okay,'” Somich said. “He knows nearly all his friends are living at home, too.” This year, the budget contains $12.5 million, a more promising number, to assist people on the waiting list, Ronan said. But before the housing waiting list is addressed, assistant commissioner Ken Ritchey of the Division of Developmental Disabilities set aside $1 million to assign roughly 200 disabled people to day programs, which are in short supply. “Ken Ritchey didn’t want anybody sitting home with nothing to do,” Ronan said. That leaves $11.5 million to put together housing plans for roughly 100 people, she said. Meanwhile, families further down the list are encouraged to call their case managers at the division to talk about programs like respite and physical therapy that might be available while they wait, Ronan said. “Maybe we can provide some support right away,” she said. Dinah Fox of Randolph said she hopes the letter does more than get parents talking to the state. They need to talk to each other to devise their own plans because the budget outlook next year is grim. Her daughter, Robyn, is ranked 3,692 after waiting three years on the priority list, she said. “This is abysmal and unacceptable,” she said. Fox and her friend, Nancy Delaney, have already pitched an idea to Gov. Jon Corzine that would unite parents in common geographic areas to pool their state funds to purchase and set up homes for their disabled loved ones. They would then arrange for a flow of existing state and federal entitlements to help pay the ongoing operating costs. But so far, the idea has not gained traction. Fox is also devising a plan to try to get the town of Randolph to build low-income housing for disabled adults like her daughter. Fox said it was the right thing to do for state Human Services officials to send the letters. “I hope they did it for motivation … to get parents riled up,” she said. “I think their (Human Services officials’) hands are tied.” The state’s first mandatory autism registry was proposed by the state’s Department of Health and Senior Services on Monday. The registry, proposed as an amendment to the long-standing birth-defects registry, would require health care professionals to report those diagnosed with autism at any time from the day they were born through their 21st birthday. Although autism is a developmental disorder not a birth defect, the state is taking a similar mandatory approach as with its successful birth-defects registry. Children with autism can currently be registered with the state’s special-needs registry, but it’s done on a voluntary basis. “The goal has always been to use this information to identify possible clusters or issues with different parts of the state,” said Gloria Rodriguez, director of the Special Child Health and Early Intervention Services for the Department of Health and Senior Services. Rodriguez said the purpose of the registry is to connect people with autism in New Jersey to state-provided social- and economic-assistance services. She said earlier access to services for people with autism usually leads to better outcomes later in life. While autism advocacy groups and the public need time to review the proposed amendment, many hope the proposal further addresses some of the concerns families have regarding autism support. “Hopefully, this is one step toward really planning the needs for the autism community,” said Leslie Long, director of public policy and systems advocacy for Autism New Jersey, formerly the New Jersey Center for Outreach and Services for the Autism Community. Though mandatory, the proposed amendment would allow parents or guardians to choose to withhold personal information, such as names and addresses. Rodriguez said nonspecific information would still be required – essentially making the person just one more number in the total autism population – but its usefulness would be limited because it would block outreach. “A 60-day public comment period on the autism registry is open until Jan. 16. The state will not accept e-mails. Comments can be sent to: Ruth Charbonneau, director of the Office of Legal and Regulatory Affairs, New Jersey Department of Health and Senior Services, P.O. Box 360, Trenton, N.J. 08625. The comments and their responses will be published in the state register after the period ends. The register can be accessed through most libraries, according to the DHSS.
” Disability Rights New Jersey (DRNJ), New Jersey’s designated protection and advocacy system for people with disabilities, is interested in learning more from parents about their experiences in IEP meetings. Click here to provide information regarding your most recent IEP meeting. The Division of Family Health Services in the Public Health Services Branch of the Department of Health and Senior Services proposes new rules and amendments at N.J.A.C. 8:20, which establishes the Birth Defects Registry. The proposal would establish an autism registry and a severe neonatal jaundice registry. This proposal would require health care professionals to report diagnoses of autism in children from birth through twenty-one years of age. N.J.S.A. 26:2-187 requires the Department of Health and Senior Services to implement the reporting of autism and to establish an autism registry. Autism is a developmental disorder of brain function that is typically manifested by impaired social interaction, problems with verbal and nonverbal communication and imagination, and unusual or severely limited activities and interests. Under the proposal, health care professionals would not report the personal identifying information of a child diagnosed with autism if the child’s parent, legal guardian or custodian objects to the reporting of this information, or if the individual through age twenty-one who is diagnosed with autism objects to the reporting. Health care professionals would be required to inform the parent, legal guardian, custodian or individual through age twenty-one of the right to refuse to report identifying information. The proposal would require clinical laboratories to report newborns with severe neonatal jaundice, a condition that is caused by a buildup of bilirubin, an orange-yellow pigment found in bile. Toxic levels of bilirubin can cause severe neurological damage called kernicterus. N.J.S.A. 26:8-40.21 requires the Department to establish a severe neonatal jaundice registry. The proposal would also make the reporting requirements for congenital conditions more consistent with the Centers for Disease Control and Prevention (CDC) Guidelines, and extend the reporting requirements for congenital conditions from birth through five years of age. Under the proposal, the information on individuals with these conditions that is reported to these registries would remain confidential. The data contained in these registries would be used for public health research, needs assessments, and public health investigations. The notice of proposal appears in the November 17, 2008 issue of the New Jersey Register. The public has until January 16, 2009 to comment on the proposals. Persons wishing to comment on the proposals must submit their comments in writing to Ruth Charbonneau, Director, Office of Legal and Regulatory Affairs, New Jersey Department of Health and Senior Services, PO Box 360, Trenton, NJ 08625. Written comments on the proposals must be postmarked on or before January 16, 2009, which is the close of the 60-day public comment period for the proposals. “OCEAN COUNTY – Representatives from Autism New Jersey, formerly COSAC,garnered support from the Ocean County Board of Chosen Freeholders for NJ Senate Bill 1650, The Self-Directed Support Services for Persons with Developmental Disabilities Rights Act. The proposed legislation would add protections to individuals with developmental disabilities, who chose self-directed residential supports through the Division of Developmental Disabilities. Presenting information on the bill to Freeholder Director Joseph H. Vicari from the left are: COSAC Director of Public Policy and Systems Advocacy Leslie Long, COSAC Executive Director Dr. Linda Meyer and Public Policy and Systems Advocacy Coordinator Debbie Charette. ” Press Release: October 17, 2008 222 South Warren Street Trenton, NJ 08625 Contact: Pam Ronan (609) 292-3703 TRENTON New Jersey Department of Human Services’ (DHS) Commissioner Jennifer Velez announced today that DHS’ Division of Developmental Disabilities (DDD) has received approval from the federal Centers for Medicare and Medicaid Services (CMS), to amend the state’s existing Home and Community Based Services Waiver. These changes will allow DDD to receive matching funds for many community-based services – that currently are funded only with state dollars – for people with developmental disabilities. The waiver, which has been in place since 1982, is commonly referred to as the Community Care Waiver (CCW) and allows the state to use Medicaid funding to pay for certain services provided to people living in the community, rather than in an institution. Most of these services are provided by contracts with social service agencies. “The state’s amended Community Care Waiver is both beneficial to individuals and fiscally responsible,” said Commissioner Velez. “More of the services we provide will now be eligible for cost-sharing, helping the state to continue providing these services through tough fiscal times.” Through the amended waiver, DDD will be able to bill the federal government for a portion of the cost of a number of services that currently are funded entirely by the state, including community transition services, support coordination, assistive technology devices and non-medical transportation needs. In addition, through amended waiver language, DDD can now increase respite service providers and bill hourly for day habilitation and supported employment services. The amendment is retroactive to January 1, 2008. “This amended waiver also now provides federal matching funds for the budgets granted to people who are self-directing their services,” said Assistant Commissioner Kenneth Ritchey , who oversees DDD. “This option provides individuals greater choice in the services that they receive and the way in which they receive those services.” More than 40,000 people, including almost 2,900 who reside in one of the state’s seven developmental centers, are eligible for services funded by DDD. The division’s $1.3 billion budget for SFY2009 includes more than $900 million in contracts with agencies that provide community-based services throughout New Jersey. Click here to download Autism New Jersey’s / COSAC’s Medicaid Fact Sheet. A meeting of the Senate Health, Human Services and Senior Citizens Committee will include a discussion about Senate Bill 1650, “The Self-Directed Support Services for Persons with Developmental Disabilities Rights Act,” on October 16 at 10:00 AM, Committee Room 1, first floor at the State House Annex in Trenton, NJ. Senator F. Joseph Vitale (D-19th legislative district) is the Chairman of the committee. The legislation would add protections to individuals with developmental disabilities who chose self-directed residential supports through the Division of Developmental Disabilities. The meeting is open to the public. If you would like more information about this bill, please call COSAC Public Policy and Systems Advocacy Director Leslie Long at 609.883.8100, extension 48. The Washington Post 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,” Oldha
