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Making the Move to Managing Your Own Personal Assistance Services (PAS): A Toolkit for Youth With Disabilities Transitioning to Adulthood

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HANNAH’S STORY “’If it doesn’t work out, I’ll just come back with you,’ I had told my parents before leaving, secretly hoping I wouldn’t have to, but prepared to nevertheless. Having cerebral palsy since birth, I understood well the intricacies involved in ensuring my basic needs—such as getting up, dressing, and going to the restroom—were met. I need assistance with all th HANNAH’S STORY “’If it doesn’t work out, I’ll just come back with you,’ I had told my parents before leaving, secretly hoping I wouldn’t have to, but prepared to nevertheless. Having cerebral palsy since birth, I understood well the intricacies involved in ensuring my basic needs—such as getting up, dressing, and going to the restroom—were met. I need assistance with all these tasks. And while I am not able to transfer myself, I’m fairly independent once in my chair. Although my mom had agreed to stay with me a few days longer to help settle things, I knew there was a possibility I’d have to spend my summer at home in Chicago rather than in the Washington, D.C. area, where I had accepted an internship with the federal government. I had a place to stay, a job, and one personal assistant. Despite a variety of unresolved issues I faced, including finding additional personal assistant(s), my parents had agreed to drive out East. ‘If nothing else,’ I had jokingly explained, ‘consider it a vacation.’ The months leading up to coming to the Washington, D.C. area had been riddled with ‘hurdles.’ Amazingly, every one of the obstacles had been moved—albeit sometimes at the last minute. From misplaced paperwork to a housing mix-up and no assistants (until days before leaving Chicago), the preparation period had definitely been a character-building and faith-building experience. Through it all, friends encouraged and assured me I’d have plenty to share when everything was said and done. They were right.” Transitioning into adulthood can be awkward for nearly every young person. Some youth with disabilities may need extra supports throughout their transition period in order to make informed choices and become self-sufficient adults. For transition-age youth who use personal assistance services (PAS), issues surrounding managing PAS can be intensified by normal developmental concerns such as striking out on your own, refining your self-identity, and navigating the road into adulthood. Having someone assist you in doing anything—whether it’s help with homework, learning to drive, getting dressed, or bathing—is highly personalized. How you approach the tasks associated with your personal care can depend on so many things: your existing knowledge base, willingness to learn and try new things, daily mood, sense of safety, personal preferences, likes, dislikes, and specific relationships with your family members and friends, ability to trust others, and many other intangible factors. In addition, many systemic barriers complicate the world of PAS—from funding and program eligibility complexities to legal and program culture issues, this mix of personal and systemic challenges can be daunting. This toolkit is meant to help transition-age youth with significant disabilities as well as their family and friends navigate the complex world of PAS. Whether moving from school or a home setting to work, college, or living on their own, transition-age youth and their families or friends would benefit from preparing for and taking care of these issues. This toolkit is meant to be practical. Users are strongly encouraged to adapt the examples to their own situations, and to pick and choose the strategies that work best for them. It’s not necessary to use the entire toolkit, nor is it essential to use the tools in order. It is also not intended to serve as a legal reference. Please consult other resources for this information.


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HANNAH’S STORY “’If it doesn’t work out, I’ll just come back with you,’ I had told my parents before leaving, secretly hoping I wouldn’t have to, but prepared to nevertheless. Having cerebral palsy since birth, I understood well the intricacies involved in ensuring my basic needs—such as getting up, dressing, and going to the restroom—were met. I need assistance with all th HANNAH’S STORY “’If it doesn’t work out, I’ll just come back with you,’ I had told my parents before leaving, secretly hoping I wouldn’t have to, but prepared to nevertheless. Having cerebral palsy since birth, I understood well the intricacies involved in ensuring my basic needs—such as getting up, dressing, and going to the restroom—were met. I need assistance with all these tasks. And while I am not able to transfer myself, I’m fairly independent once in my chair. Although my mom had agreed to stay with me a few days longer to help settle things, I knew there was a possibility I’d have to spend my summer at home in Chicago rather than in the Washington, D.C. area, where I had accepted an internship with the federal government. I had a place to stay, a job, and one personal assistant. Despite a variety of unresolved issues I faced, including finding additional personal assistant(s), my parents had agreed to drive out East. ‘If nothing else,’ I had jokingly explained, ‘consider it a vacation.’ The months leading up to coming to the Washington, D.C. area had been riddled with ‘hurdles.’ Amazingly, every one of the obstacles had been moved—albeit sometimes at the last minute. From misplaced paperwork to a housing mix-up and no assistants (until days before leaving Chicago), the preparation period had definitely been a character-building and faith-building experience. Through it all, friends encouraged and assured me I’d have plenty to share when everything was said and done. They were right.” Transitioning into adulthood can be awkward for nearly every young person. Some youth with disabilities may need extra supports throughout their transition period in order to make informed choices and become self-sufficient adults. For transition-age youth who use personal assistance services (PAS), issues surrounding managing PAS can be intensified by normal developmental concerns such as striking out on your own, refining your self-identity, and navigating the road into adulthood. Having someone assist you in doing anything—whether it’s help with homework, learning to drive, getting dressed, or bathing—is highly personalized. How you approach the tasks associated with your personal care can depend on so many things: your existing knowledge base, willingness to learn and try new things, daily mood, sense of safety, personal preferences, likes, dislikes, and specific relationships with your family members and friends, ability to trust others, and many other intangible factors. In addition, many systemic barriers complicate the world of PAS—from funding and program eligibility complexities to legal and program culture issues, this mix of personal and systemic challenges can be daunting. This toolkit is meant to help transition-age youth with significant disabilities as well as their family and friends navigate the complex world of PAS. Whether moving from school or a home setting to work, college, or living on their own, transition-age youth and their families or friends would benefit from preparing for and taking care of these issues. This toolkit is meant to be practical. Users are strongly encouraged to adapt the examples to their own situations, and to pick and choose the strategies that work best for them. It’s not necessary to use the entire toolkit, nor is it essential to use the tools in order. It is also not intended to serve as a legal reference. Please consult other resources for this information.

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