eSpecially Ben

When Ben moved into his group home more than four years ago, a friend suggested we plan a tailgate party for the residents. Since then, we've hosted therapy dogs, yoga, live music, gardening days, crafting events, trivia games, bingo and much more.  Friends, neighbors and family members serve as the volunteers. Staff jump in to help. The residents go along with most of the activities we plan. Their favorites are definitely music trivia and bingo. And we must bring snacks; they never ask but I wouldn't show up empty handed. Unintended Results of Volunteering  1. Opens communication between our family and the staff at the group home. 2. Introduces others who volunteer to group home living. They develop friendships with Ben and the other residents. 3. Forms partnerships with local schools and businesses. The Beta Club at the local Montessori high school volunteers each year. Several businesses and foundations continue to donate every year. 4. Connects us to Ben in another way. If...

Disability Night Out is Saturday, October 10, 2026 It's a community night out, a collective action, and a real-world access check, all at once. People with disabilities, their families, and allies dine out together nationwide. Aim to be at the table between 6 and 9 p.m., your local time. Pick a restaurant, show up and tell us what happened.  Send us the details at here.  Learn more and get the details: Disability Night Out. 🠞Where are you headed for Disability Night Out?

Many years ago, I created a book to share with new staff, therapists and teachers. I update it as Ben's needs change but the core stays the same. It's been a quick way for people to learn about Ben – and it's written from Ben's perspective, giving him a voice to share his story and preferences. Make a book with these sections: Family members Friends Favorite foods Favorite people Quirks and skills Favorite movies and TV shows Favorite activities Add current photos of your child as well as older ones to give readers context. Include sections that fit for your child such as medications list, doctors' contacts, equipment, things to avoid, calming activities, allergies, diagnosis details, etc.  🠞Let me know in the comments what you'd add to your child's book. Here's a sample from Ben's book: Quirks & Skills ·        I don’t like my shirts or pants to be pulled up. Roll up my sleeves and I’ll have them down faster than you can say, Jack Russell. · ...

If you’ve been following the news, you may have heard about a recent court case in Texas that threatens a law that protects people like Ben from entering institutional facilities such as nursing homes instead of living at home or in a group home. Community integration and community-based services have been at the core of Ben's life – these program are the reason why he thrives now as a 23-year-old man. A  threat to these services is a threat to so many individuals with disabilities. SUMMARY Texas v. Kennedy changes how disability care rules are handled.  What the rules were: In 2024, the federal government made rules requiring states to help people with disabilities live in their own homes and local communities instead of forcing them into nursing homes or institutions. What the court decided:  Alaska, Florida and Texas sued to get rid of these rules. Many more states were involved in the beginning but withdrew due to advocacy pressure . The federal government agreed to...

Since 2023, we've been planning activities and events at Ben's group home in Charlotte. Family, friends, neighbors, local schools and businesses, and local and national nonprofits have contributed in so may ways. Together, we are a team! The Easterseals PORT Health group home manager, Tylesha, makes volunteering at the house easy. She removes barriers to ensure her residents get the best experience while living under her care.  Thank you!  

  My sister, Olivia, started a pen pal program in honor of Ben: Ben Pals. Read more about it in this Easterseals PORT Health newsletter: Time-Honored Letter Writing Ben with Olivia