Jeremy Myron, a 21-year-old with autism, folds towels on March 13 at his home in Brick Township. His family hopes that he will overcome institutional hurdles to build a life that is on par with those of typically developing young adults. STAFF PHOTOGRAPHER ERIC SUCAR This year is one of monumental change for Jeremy Myron, who turned 21 this month. After he graduates from Brick Township High School in June, he will embark on a journey to build a life without the cast-iron entitlements of his youth and the power to fight on his own behalf.
“My dream is for him to be independent — or as independent as he can be — in his own community, to be safe, to have the opportunities, and to not hope that I’m going to have to cross my fingers for funding,” said Carol Myron, the young man’s mother and fiercest advocate. But the future is uncertain for Jeremy.
Doctors diagnosed him with autism months after his second birthday. The startling verdict established a safety net of federally mandated services that would only expire now, 19 years later, at the end of his high school career.
Jeremy Myron, a 21-year-old with autism, compiles a grocery list with his mother, Carol Myron, on March 13 at their home in Brick Township. Life skills such as shopping, cleaning and cooking will prove critical as he strives for independence. STAFF PHOTOGRAPHER ERIC SUCAR About one in every 49 children in New Jersey falls somewhere on the autism spectrum. One advocacy group expects 500,000 Americans with autism to age into adult services over the next decade.
People with developmental disabilities like autism must go through Medicaid and the state to receive assistance, according to Liz Shea, who oversees the New Jersey Division of Developmental Disabilities (DDD).
When an individual clears the eligibility hurdles and turns 21, division services — ranging from job coaches to funds for day programs — should become immediately accessible, she said. As of January, nearly 13,000 individuals were receiving some type of support through the DDD, according to the state. Recent state budgets included line items to accommodate each class of high school graduates with autism. In 2012, the DDD allotted about $1 billion for contracts with private care providers, according to the state.
“The governor has made a commitment every year to make sure that anybody who exits the school system and is eligible for the DDD has some kind of employment or day service available to them,” Shea said.
That does not diminish the worries of some parents, including Carol, who fear that the loss of the education entitlement could disrupt the lives of people with autism and their families.
“[Jeremy is] no longer entitled to anything. He has to qualify for services,” said Carol, a single mom who was recently appointed to the Ocean County Commission for Individuals with Disabilities. “Once he qualifies, is there a program? Is there funding?”
Leslie Long, director of adult services for Autism Speaks, said the Medicaid Community Care Waiver is the only entitlement for adults with developmental disabilities. Both Medicaid and the state pay good money to individuals who qualify for that program, she said.
But more than 300,000 names line waiting lists nationwide for Medicaid waivers, Long said. Without that boost, budgets for people with autism are often strapped, she said.
“When they age into adult services, they’re lucky to get $23,000 a year to support them in what was a $100,000-a-year budget,” she said.
So, what is the goal of this transition? That depends on the individual, Long said, but it is most often grounded in everything for which a typically developing person strives: independent living, work, safety and a healthy social life.
In New Jersey, developmentally disabled people live in a variety of settings, Shea said. Many reside with their families, some move into supervised environments and group homes, and others live alone with occasional in-home assistance, she said.
Reforms that are coming down the pike at the state level could affect housing and other services in the coming years.
“The current spectrum of supports and housing services that we have will continue to be available, but people are going to have to start to look at ways to access pieces of it differently than they do now,” Shea said.
Waiting lists for people with autism to enter residential settings are lengthy in the United States, Long said, noting that it could take 10 years for somebody to shift to such a dwelling in New Jersey.
“We’re not transitioning kids into really independent adult life,” Long said of the country. “I just don’t think we know how to do it well yet.”
Carol said she wants Jeremy to forge a path to independence, like her 25-year-old typically developing son is currently doing.
“Jeremy could stay with me forever, but in a typical world, eventually kids get older and they move,” she said.
For the time being, Jeremy will enroll in a privately run day program.
Linda Meyer, a co-founder of one such institution and an applied behavior analysis professor at Caldwell College, said the state does not have enough day programs to meet the demand.
“You have parents who often don’t have choices of where their kids are going to spend their day,” she said. “They’re so desperate, they’ll just settle and put their kids anywhere.”
Transportation, the distance from one’s home and hours of operation all play into a parent’s decision, she said.
Parents may choose to receive self-directed services from the DDD, which allows them a budget to craft distinct schedules for their children, Meyer said.
“These parents become business managers. It’s like they’re CEOs of their own kids’ lives,” Meyer said.
Carol plans to self-direct Jeremy’s days. Although she chose a day program, she is not totally satisfied with the level of service, she said.
Steady jobs are one route to autonomy. In 2012, New Jersey became an Employment First state, which made a priority of the fight for jobs for people with disabilities, said Jennifer Joyce, who manages employment and adult services for the DDD.
“So, if services and supports are needed to help that individual be able to work, then let’s make sure we’re providing those services and supports,” Joyce said.
While another state department handles employment for people with autism, the DDD takes over when necessary, she said. Division case managers then identify an individual’s skills, strengths and interests. They also network with employers to best meet both parties’ needs, Joyce said.
Once a person with autism lands a job, the division might help that individual connect with co-workers who could lend assistance down the road, or assign a job coach who creates solutions to unique problems. She said the division shoots to improve job safety for recipients, too.
“We want people in their communities, working the jobs that everybody else may have,” Joyce said, adding that people with developmental disabilities historically perform food-service, janitorial and warehouse tasks, but division officials are trying to break that mold.
Carol said her son is dead-set on routine, following the rules and reaching goals. That would be perfect for a career in data entry or distribution, provided he is given the chance, she said.
“You give him a task, he’s going to perform it,” Carol said. “And you know what? He’s not going to sit on his cellphone and text and be on Facebook. That, I can guarantee you.”
Like other parents of children who have autism, Carol plans to take matters into her own hands. She is in discussions that could soon launch a coffee company that would depend on the labor of adults with developmental disabilities.
The mother also aspires to found a “hangout house” for Jeremy and his peers. There, she said, they could socialize, cook meals, exercise, play video games and relax — just like any other 20-something.
What should individuals or families do now?
Spring 2014:
Complete the Developmental Disabilities Resource Tool (DDRT)
Correspondence, such as information about accessing and completing the survey, has been sent to 2014 graduates. It can be completed online or via phone.
Complete Support Coordination Selection Form
Graduates will need support coordinators from Support Coordination Agencies to assist them in writing their service plan and accessing needed services and support. 60 days prior to graduation, complete and submit the Support Coordination Agency selection form in order for DDD to assign a Support Coordination Agency based on one’s preference. Those who do not have a preference should indicate that on the selection form; a support coordinator will be assigned. The Support Coordination Agencies selection form and list of currently approved Support Coordination Agencies can be accessed on the DDD website at www.nj.gov/humanservices/ddd/ programs/supportsprgm.html.
Develop DDD’s Individualized Service Plan (ISP)
DDD will assign a support coordination agency based on the selection form. The agency will then assign the support coordinator, who will be responsible for writing the ISP. The planning team will meet to initiate the person-centered planning process and complete the Person-Centered Planning Tool (PCPT). The support coordinator develops the ISP with help from the DDRT, PCPT and the planning team to identify outcomes, supports and service providers based on the assessed level of need. The ISP should be completed and approved within 30 days of assignment to a support coordination agency.
Summer 2014
Access DDD-funded services The support coordinator will make arrangements with the service providers to start services as identified in the approved ISP.
For additional information:
Medicaid eligibility and DDD: www.nj.gov/humanservices/ddd/services/ medicaideligibilty.html DDD support program: www.nj.gov/humanservices/ddd/ programs/supportprgm.html DDD Help Desk: Support programs — [email protected] Medicaid eligibility — [email protected] Rate setting — [email protected] Community Care Waiver — [email protected]