“We are the population that was hoped for — and now we’re here.”
- L. Vance Taylor
This statement made by a close friend of mine perfectly captures the spirit that satiated the room at the PPMD Duchenne/Becker Transitions Meeting which took place at this year's Connect Conference. For two days, teens, young adults, parents, and community members gathered to learn about how to ensure that now that people with Duchenne survive into adulthood with greater frequency than ever before — that they also THRIVE in adulthood. Topics included modifying home & work spaces; hiring & managing PCAs; benefit eligibility & financial savvy; understanding your own healthcare needs; dating & relationships; building your support network; and an extensive look at the impact that Duchenne & Becker has on parents, siblings, and spouses (for men who are married). Fittingly, our inaugural Transitions Meeting for our ‘ADA generation’ took place in D.C. as our nation kicked off its celebration of the 25th anniversary of the Americans with Disabilities Act. And while we all acknowledged with gratitude how far we’ve come as a nation, many of our discussions outlined the policy issues and resource pathways that must be created and improved for our new generation of men to achieve their fullest potential.
The meeting was a tremendous success thanks to the amazing presenters and panelists who shared their candor and wisdom, the participants who came together for these two rare and extraordinary days, and the planning committee of adults with Duchenne/Becker who crafted and implemented a transformational experience: Alan Chaulet, Mario Damiani, Ben Dupree, Kanch Randhawa, and Tayjus Sarumpudi.
So, while we can’t recreate the energy we all felt while gathered together last month for those who were unable to join us, we can ensure that you have access to some of the wonderful information that was shared by our presenters. So – if you also now worry more about your 401K than your CK, these materials are for you…
The REAL 'New Math': Financial Literacy for Disability Benefit Eligibility — the Good, the Bad, the Ugly
Being financially literate as you move towards independence and into adulthood takes on a different meaning when you are an adult living with a disability. This session provided an overview of the programs that people with Duchenne/Becker are often eligible for (SSDI, Medicaid Waiver, RSA, etc) and the basic eligibility criteria.
Disability Benefits Specialist presenter
Speakers: Marilyn Morrison, Virginia Access
“There’s No Place Like Home”
From home modifications to campus considerations in college to finding an accessible home when you move away from mom & dad, this session was all about ‘Accessing Your World’ and how to fund it.
Adapting Your World through Technology
Adapting your world for you through gadgets, apps & innovation.
Speakers: Alan Chaulet
Building Your World
A primer in your rights, legal requirements, and creative solutions to common barriers when modifying residential spaces.
Speakers: Rex Pace, Technical Assistance Coordinator, Access Board
Family Ties Series
We spent some time viewing the transition to adulthood from the vantage point of those who shape, impact, and share this journey (parents & siblings), as well as a few men who’ve transitioned into new roles within the family dynamic as they’ve married and started families of their own.
‘PCA’ – 3 Little Letters that Mean So Much
A panel of men with Duchenne/Becker joined by Personal Care Attendants (PCAs) for a panel discussion about recruiting, screening, hiring, training, managing, and fostering healthy relationships with your PCAs.
Panelists: Alan Chaulet, Kanch Randhawa, Richard Barker, Drew Bonner
From Where We Sit: The Outlook through Our Eyes
Panelists: Alan Chaulet, Ben Dupree, Tayjus Sarumpudi, Mario Damiani, Kanch Randhawa