Clearing the hurdles and managing life skills while disabled is arduous enough, experts say, but another obstacle confronts the mentally challenged on their journey.
“Some people call it the cliff or they say ‘the bus stop is coming,’” said Amy McCann. “It’s when the family is entering the transition process.”
And that process – from when the intellectually disabled are under care and supervision in school to when they turn 21, must leave school and seek a place in “the real world” – is a difficult, unclear period.
“The family may have a vision for the individual but they’re just not sure how to get there,” said McCann. CEO and program director, Carousel Connections, of Ardmore, PA, in suburban Philadelphia, a service provider supporting intellectually disabled individuals as they build independence at home, work and in the community. “Their vision may be that they want their adult child with a disability to live like their other siblings, but they don’t know how to get from A to B.”
Added McCann: “We help create that roadmap of sorts.”
For about 10 years Carousel Connections, like other service providers in the United States, has worked with intellectually disabled students 16 to 21 with Autism, Down syndrome and other debilities in establishing an Individual Support Plan that sets goals for the disabled individual.
“Services might include community participation, day programming, living away from home, and support services for a job,” said McCann. “There’s a whole menu of services, and a family and individual can choose their vision and how they want to build their routine and schedule.”
The residential training program, for example, sees many who’ve never stayed outside the family home.
“They’ve always slept inside the same home as their family, even for sleepovers and vacation,” she said, noting “neuro-typical” individuals have other experiences away from primary caregiver. “This letting-go process for a family takes a lot of trust. We have to build trust as a team.”
Support coordinators at Carrousel Connections, which regularly sees about 55 to 60 disabled participants weekly with its staff of 35, put into place the plan for the disabled person. Staff “mentors” and “coaches” then work directly with the person on their plan and on many elements like cooking, self-care and dressing.
Two of Carousel Connection’s Down syndrome individuals -- a pair we’ll explore in the next article here -- have seen life grow in many ways including living independently in their own apartment beginning this month.
The “letting go” process, said McCann, involves trust and dignity.
“For example, the person we’re supporting will say, ‘I want to get from Ardmore to Center City on the train,’ and the parent might say, ‘No, you can’t do that,’” she explained. “Our team comes in and scaffolds the process.”
In that travel training, a “mentor” initially sits next to the disabled individual “as they see and learn how to engage with the conductor and other passengers.” The mentor next moves a few seats behind in future trips “so there’s a little more hidden supervision.” The mentor then rides in the next passenger car back from the disabled person’s location.
“Slowly but surely we get to the point where we’re tracking them on smart-phone technology and we can see where they are,” said McCann. “We book-end it going from one destination to their arrival. When individuals and families can recognize these stepping stones, the vision becomes possible.”
NEXT: Sarah and Bryn’s remarkable story.