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Deciding Who They Want to Be: Young Adults With Special Needs Make Transition From School

Sunday, October 19, 2014
Leah Wright, 22, has spent the past few months settling back into the town she lived in until she was 11.

After graduating from Perkins School for the Blind in Massachusetts, she returned to Windsor, where she and her family have been laying the groundwork for the next chapter of her life.

On the weekdays, while her parents are working, she attends a special education program. Recently, Leah took a part-time job at a local convenience store — she likes the people and the pocket money.

Frank Vanek graduated from Woodstock Union High School in 2011, and soon after, his mother left her job to be his full-time caregiver. “Frankie,” now 23, is “ a sweet boy” with a good sense of humor, said Delia Vanek. Still, their life together isn’t easy. Money is tight and she has little time to herself. But Frank, a tall, burly guy whose special needs include a stress disorder, can be unpredictable, and his mother said she knows better than anyone how to help him.

Ryan Guidotti, 26, tried a number of different jobs after high school before he found his place. Long interested in health care, Guidotti completed Project Search, a school-to-work program for young adults with intellectual and developmental disabilities based at Dartmouth-Hitchcock Medical Center. Soon after, he landed a job at DHMC that really suits him, as well as an apartment of his own in Lebanon.

W hile they are in school, people with special needs are entitled to certain services and supports. But after graduating, they enter what is often called a “non-entitlement system ” — that is, services are not guaranteed. As young adults prepare to leave the cocoon of school, their parents face questions familiar to anyone who has raised a child. Where will he live? How will she cover her living expenses? How much support will she need?

But when a young adult has special needs, families can face a series of additional complexities.

After leaving the structured environment of high school, “a lot of people feel like they are dropped off a cliff, in some regards,” said John Fenley, president of People First of New Hampshire, a self-advocacy group that recently co-founded Spark, a community center in Lebanon for people with special needs that offers social activities and classes, as well as information about resources for people with special needs.

“That’s kind of why Spark started, in a way,” said Fenley, 29, “because so many of my friends were just sitting around at home.”

According to the 2010 U.S. Census, about 15.2 million, or 6.3 percent of Americans age 15 and older, have a mental disability, a term that includes learning disabilities and developmental disabilities, as well as other conditions, such as depression. In the same age group, 14.9 million, or 6.2 percent, have a condition that affects their ability to see, hear or speak. Some people with special needs require little or no support as adults, while others need services ranging from occasional assistance to round-the-clock care.

As is the case for most students, the transition from school to adult life begins, but doesn’t end, in high school. Deciding how an adult child will spend her days, finding the appropriate supports and figuring out how to pay for them are among the challenges students with special needs and their families face. With its myriad details and decisions, paperwork and logistics, putting the pieces in place can be daunting.

‘Starting Early is Huge’

In New Hampshire, students with special needs can stay in school until they are 21; in Vermont, they can stay until they are 22. Depending on the student and how federal laws are interpreted, the transition planning process begins by the time a student is age 14 or 16. In addition to students, their parents and special education teachers, the process also involves various organizations, such as the states’ divisions of vocational rehabilitation, and developmental service agencies.

“We like to introduce the family to the agencies so they can choose the one that feels right for them,” said Elizabeth Barker, director of special education in the Hartford School District.

Creating a transition plan can be “pretty tricky” for parents, said Pam Cyr, the intake coordinator at PathWays of the River Valley, the state-designated agency that supports people with developmental disabilities and brain injuries in Sullivan and lower Grafton counties. “We try to really work with them over those years … to say, ‘What’s this going to look like?’ ” Cyr said. They begin with a projected list of what the student might need after graduating, and then update it periodically.

Depending on a student’s needs, parents may also decide to apply to become their adult child’s legal guardians, which allows them to make legal, financial and medical decisions for their child. Parents, school staff members and service providers alike stress the importance of planning ahead.

“Starting early is huge,” said Barker, whose 21-year-old daughter, Jenny Mayfield, has special needs. “Get guardianship if you need to. Try to get all those things in place ahead of time, and make sure you have a good picture of what it’s going to look like.”

Katie Gilcrist, of Health Care and Rehabilitation Services, the state-designated agency that provides developmental supports in Windsor and Windham counties, emphasizes communication.

Parents should keep asking questions to better understand the next step and communicate with the agencies they are working with, said Gilcrist, the nonprofit’s waiver manager. “It’s a team effort, and the earlier you can develop and create that team within the agency, the more comfortable you are going to be in transitioning. It’s about the relationship.”

During students’ last year of school, the Hartford-based Regional Resource Center, which serves Hartford and other Upper Valley districts, tries to duplicate what their days will look like when they leave. With staff members’ support, they learn to ride Advance Transit buses and access community activities, such as those offered through the Special Needs Support Center in Lebanon.

But after graduation, everything changes.

“Your kid was busy in school all day, every day, and then they are not,” Barker said. “It’s a lot of time to fill.”

Without the school, she said, responsibility for much of the support system goes back to the parent. “Families really become their own managers, with their child’s services managed by a team and maybe yourself and a case manager.”

Wright, whose daughter is blind and has other disabilities, said parents should be prepared to advocate for their children. It’s a lesson she learned early on, when Leah, a “preemie,” spent four months in the hospital before going home for the first time.

“I was kind of a go-with-the-flow type girl when she was born,” Wright said. But through the years, she’s found herself researching the options for her daughter and working on her behalf.

“Don’t be afraid to speak up if you’re not getting what you need,” she said. And if that’s uncomfortable, “get an advocate.”

‘Taking Care of Our Own’

Families learn as they go, researching service agencies , job training programs and other supports. Just navigating the complicated maze of benefits and filling out paperwork can be like a full time job — according to the U.S. Census, income, health care and other supports for people with disabilities are available through Social Security and Medicare, as well as more than 60 smaller federal and state programs.

People with special needs and their families can apply for a Medicaid waiver with the help of various service agencies. The waiver pays for supports such as adult developmental services , and those who qualify have several options for how the services are managed.

A certain amount of funding is available for the waivers, prioritized according to factors such as health, safety and the risk of homelessness, said Kara Artus, executive director of the Burlington-based nonprofit Transition II, which helps Vermonters with special needs and their families manage their own services. “Usually the people with the highest need are the ones that get funded, but I think the majority of people who are eligible for developmental services will likely qualify for some.”

For many families working to get their adult children’s services in place, the waiting period creates uncertainty about some of the most fundamental aspects of their lives.

Denise Thorburn, of Plainfield, doesn’t drive, but she has a mentor through PathWays who takes her to work out and to Zack’s Place, an enrichment center in Woodstock for people with special needs. But up until Thorburn left school in June, it was still unclear what her days would look like, her mother, Anne Grover, said. “You kind of don’t know until last minute whether you are going to get funding.”

Having worked in the special education field for 29 years, Barker has seen a shift in the way adults with special needs live. In the past, they were often steered toward group homes and jobs in sheltered workshops, supervised workplaces for adults with disabilities which generally pay less than the minimum wage. As a result, most of their time was spent with other people with disabilities. But in the past decade or so, that’s changed.

A 1999 U.S. Supreme Court ruling that people with disabilities should live, work and receive services in the most integrated setting possible has led to group homes being replaced by developmental homes, which might comprise a family and just one or two adults with disabilities. And many states that still have sheltered workshops are phasing them out.

While the court decision aims to integrate people with disabilities into the community, some say it has unintentionally led to greater isolation, as adult children and their families are charged with patching together a daily routine. That can be difficult to do, especially with limited resources.

“So many folks are on waiting lists,” said Lisa Green, Spark’s co-founder and the mother of an adult son with special needs. “There are just not enough monies out there, so even if you are fully qualified for services, it doesn’t mean the state can afford to pay.”

For instance, her son, Patrick Green, requires care around the clock, but the state won’t pay for 24/7, she said, so he is on a waiting list for more time. And even if money is available, or a family is able to pay for the service, finding someone to do the job can be difficult.

Barker’s daughter, who lives with her, works only 15 hours a week, while she works 60 hours, Barker said. Jenny can’t be home alone, but Barker has yet to find someone to take her out in the community. Currently, she’s relying on family members to keep her daughter busy, she said. “Just trying to find a qualified respite provider is really hard.”

Parents say o rganizations such as S park, Zack’s Place, and Global Campuses Foundation, which offers advanced learning opportunities for people with disabilities, are important resources.

“Places like Spark are nice because you can establish some peer relationships, rather (than) being one-on-one with an adult that isn’t your friend,” Barker said.

Dail Frates co-founded Zack’s Place in 2006 in part so her stepson, Zack, who had special needs, could have a meaningful life after he graduated from high school. Whether it’s working or volunteering, creating art or performing, Frates said, “people in general need to feel like they are accomplishing something and contributing to society.”

The nonprofit, which Frates created with Norm Frates, her husband and Zack’s father, depends on grants, donations and fundraisers, such as its upcoming Turkey Trot on Thanksgiving Day. The longevity of Zack’s Place, and the creation of similar organizations such as Spark, makes her optimistic, Frates said.

“It’s the community taking care of our own.”

A Universal Experience

Although it starts when students are in their teens, as for most people, the transition to adulthood is an ongoing, sometimes meandering journey, as unique as the families and individuals themselves. Some people, including Ryan Guidotti, enter training programs that lead to full-time work and live on their own. Others, including Leah Wright and Frank Vanek, stay with their families.

And while every person’s story is different, they share certain challenges and rewards. Using the available, often limited resources, parents work to ensure the best possible life for their children. They try to balance protecting them while also encouraging them to grow. They sacrifice — giving up jobs they love or driving long distances so their adult children can take part in social activities. But they go on, motivated by love, by the powerful parental impetus to see their children succeed. And along the way, they cherish these young people and the special gifts they bring to their lives.

Leah has made her family see things differently, Lisa Wright said.

“You can’t help but fall in love with her.”

Aimee Caruso can be reached at or 603-727-3210.

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