eSpecially Ben

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

  In September, Ben celebrated three years living in a group home in Charlotte, North Carolina, with five other men. Ben lives 20 minutes from our house, and we see him several times a week for doctor's appointments, to drop off supplies, for group home events and sometimes because I just miss him. Ben occassionally sleeps over, and he often spends a weekend day hanging out on his favorite couch, watching videos at our house. This Easterseals PORT Health home is Ben's second placement. The first placement through another agency didn't work out, and he left after six months . We were wary of trying a new place, but it's worked out well. My husband, Ryan, and I have developed a partnership with ESPH. Over time, we've built mutual respect and trust with the residents and staff.  Here's what's worked for us: 1. Get involved with the group home. Ben lives with five other men in a six-bedroom house in Charlotte. On move-in day, Steven, one of the residents, made ...

  Dear Senator, Our 22-year-old son Bennett McCall was born with a rare genetic disorder. He’s nonverbal and uses a wheelchair to get around. He also loves to swim (he can walk in the water), roll along greenways and meet up with friends. He started early intervention at 6 months old and continued through the public school system until he was 19 years old. Ben is a product of the special education program. I am deeply concerned about the Administration’s decision to fire nearly all staff in the Office of Special Education Programs (OSEP) at the US Department of Education. For 50 years, the Individuals with Disabilities Education Act (IDEA) has had strong bipartisan support, and we are counting on Congress to ensure these firings are reversed. If not, this will have a devastating impact on babies, toddlers and all children with disabilities. The staff in OSEP are the people who ensure states follow IDEA, the law that guarantees children with disabilities the right to a fr...