FARMINGTON — Jonathan Duley is an active young man mentally and physically. He likes to hike, ski and swim whenever he gets the chance. In his free time, he’s a big fan of puzzles, Angry Birds, and recently country music.

Or at least this is what those who know him best say.

Duley, 24, is on the autism spectrum and non-verbal. He can manage what his parents call “Jon-style” sign language, but for the most part, his ability to communicate with others is severely hindered.

Throughout his childhood and adolescence, his parents, Ellie and Dan Duley, worked hard to make sure Jon was getting the best support they could provide for him. From education to health to safety and supervision, “We had hands on always,” Ellie said.

When the Duleys moved to Farmington in 2003 from Cape Elizabeth, when Jon was in seventh grade, they began thinking about his transition into adulthood.

“We were far from panicked at that point, but we were thinking what happens to Jon eventually,” Dan said. “What happens when we’re not here? Which hopefully is a long ways away. You (think) in terms of high school, and once he gets through high school, then what do we do?”

Twelve years later, thanks to the Farmington-based organization Life Enrichment Advancing People, Duley’s disabilities do not hinder his ability to lead an adult life full of joy.

Since 2012, Duley has been supported by LEAP, first living in an assisted living home in Wilton with one other roommate and now at LEAP’s Anson Street House in Farmington. Here, he and his three roommates have access to 24-hour support from LEAP direct service professionals and a myriad of opportunities provided daily to experience intellectual, recreational and social enjoyment.

35 YEARS OF CARE

For the last 35 years, LEAP and its care providers have been ensuring that individuals with disabilities in Franklin County, both more and less severe than Duley’s, are able to lead as close to normal lives as possible through several different types of support programs.

“We define quality as when an individual feels comfortable in their own home, when they feel empowered to be themselves and when there is an absence of loneliness in their lives,” LEAP Executive Director Daryl Wood said.

LEAP provides support for more than 55 people in the greater Franklin County area. Support provided by LEAP depends on how much assistance an individual needs. There are seven licensed assisted-living programs, such as the Anson Street House that Jon lives in, which are LEAP-owned group homes that feature 24-hour support from direct service professionals.

LEAP also offers in-home support programs for individuals who would rather have direct support professionals come into their own homes as needed, whether that be 24 hours a day or a few hours a week.

Almost 200 people are employed by LEAP, 87 percent in the direct service category. LEAP’s support staff and services provide an option for care after individuals have aged out of the school system and the state’s disabled child support services, but whose disability would hinder them from living entirely on their own.

“Sometimes tough decisions have to be made, and one consideration may be to engage an organization like LEAP to help create a plan that works for the family and the individual,” Woods said.

When Duley graduated from Mt. Blue High School in 2011 at the age of 20, the Duleys had long known that finding an assisted living program like LEAP would be the best option for him to maintain his independence and also allow them to manage their lives.

“It has given Jon his own home with the relationships he has with the different people in the house, and it gives him the structure he needs,” Dan Duley said. “For us, it has given us freedom we didn’t have for 22 years or so — of having your entire life wrapped around making sure Jon is taken care of and is safe, and that you have given him every shot and opportunity to develop.”

‘MAKE IT FEEL LIKE A HOME’

LEAP serves and supports any individual who qualifies under Section 21 of the MaineCare benefits program as having a diagnosis of developmental or intellectual disability. Because the range of disabilities is so broad, LEAP’s support system is based on individualized need and goals for each person it serves.

“Our entire model is person-centered,” said Kyla Wheeler, LEAP administrator at the Anson Street House. “Primarily, it used to be institutions, which would be a hundred people packed into rooms. This we really try to make feel like a home.”

The support provided for an individual by LEAP depends on what an individual needs, Wheeler said. There are some individuals with more advanced disabilities who require total care from LEAP professionals, like cooking and grinding up food for them or assistance with bathing and getting dressed.

But there are also individuals like Duley and his roommates at the Anson Street House, who cook some of their meals and do their laundry with minimal assistance from the direct service professionals in the home.

“It’s really the gamut of disabilities we support,” Wheeler said.

Direct service professionals work with each person in LEAP’s homes so they may accomplish daily goals aside from their basic needs. Wheeler said that the goals could be losing weight or learning how to budget money or even going to a concert.

As part of LEAP’s assisted living, the individuals also attend job and social skill building day programs to not only create structure for the individuals living there, but to further enrich their lives.

“We make sure every day that people are given the opportunity to go out into the community,” Wheeler said.

That means Duley independently takes the bus to his two different day programs, which alternate days during the week. One of his day programs is centered around job skills building — learning how to do tasks that he wouldn’t otherwise be able to learn at home, Wheeler said. The other program focuses on crafts and social skill building.

His parents say that Jon’s advanced disabilities will most likely prevent him from maintaining a job, but the job skills program reinforces the structure he needs in his day-to-day life.

“We always wanted Jon in a supported living situation, because for him, we felt he should have a life that is independent from us,” Ellie Duley said. “He needed more structure than we could give him. Once he graduated from high school he was very unsettled behaviorally because we couldn’t replicate the structure that he had with the school day.”

Other LEAP-supported individuals do maintain jobs in the Farmington community. Wheeler said some people work at Hannaford supermarket, and several work at the local Touch of Class thrift store, holding a range of positions from putting clothes on hangers to working the cash register.

Providing recreational opportunities and engaging individuals in activities they enjoyed doing while they were growing up is another important pillar in LEAP’s individual based enrichment model.

“Here we try to do what the people want to do,” Wheeler said. “We’re always asking the question ‘How do we make sure the people we support are feeling joy?'”

Duley, who enjoys hiking and skiing, is provided a recreational excursion with a LEAP professional every other weekend.

“He’s happy. They give him all the opportunities that we did as far as recreation. They give him more opportunity actually because he is an adult now,” Ellie said.

‘FALLING OFF THE CLIFF’

It took the Duleys much time and effort to get Jon where he is now as a disabled adult receiving state-funded support and living in a sustainable and happy situation.

Most of the reimbursement that LEAP receives for its direct support services come through MaineCare. In order to be eligible for MaineCare benefits to apply to in-home or community support services, such as LEAP, as opposed to institutional services, disabled adults and their guardians must file a waiver with the state.

Until that waiver is accepted by the state, the individual is essentially in limbo in terms of access to support services.

According to the Duleys, the waiver process is not an easy one.

“We really couldn’t do anything until he received his waiver from the state. And they’re really hard to get. They’re impossible to get,” Ellie Duley said. “That is the biggest problem for adults his age. They call it falling off the cliff when you lose your children services and you can’t get your adult services because you don’t have that funding.”

The Duleys applied for Jon’s waiver when he was 18 and still in high school. Once the waiver was filed, it was three years before Jon received approval from the state in May 2012 to get adult service funding. Jon had graduated from high school in May 2011 at age 20, meaning that supporting Jon and securing funding for his needs fell on the Duleys for a year.

In the year between graduating from high school and receiving funding, the Duleys exhausted every avenue to support their son on their own. A patchwork of in-home care providers for a few hours a week made it possible for the Duleys to work while Jon was at home. Ellie Duley had even gone as far as writing a letter to Gov. Paul LePage about the difficulties of the waiver program.

Dan Duley said it was a shock. “You go through his entire childhood … and having lots of support available, and then boom, he’s no longer in high school, is not getting services, and he’s an adult and we have no help at all.”

Multiple messages left with the Department of Health and Human Services for comment last week were not returned.

When the Duleys’ caseworker called in May 2012 to say the waiver had been approved, Ellie Duley said it was Christmas morning. By Aug. 1 of that year, Jon was placed in his first LEAP assisted-living home in Wilton, where he lived for a year before moving to the Anson Street Home.

Lauren Abbate — 861-9252

labbate@centralmaine.com

Twitter: @Lauren_M_Abbate

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