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...