Protect Children With Disabilities

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 free appropriate education and supports states to better serve children with disabilities and their families.

Without OSEP, there will be no federal oversight, no accountability, and no one to make sure that states uphold the rights of children with disabilities and support their efforts to do so.

Before IDEA became law in 1975, over a million children with disabilities were prohibited by states from going to school.

Please take immediate action to stop these firings and reinstate the staff who protect the educational rights of children with disabilities.

Sincerely,
Vanessa Infanzon
Charlotte, North Carolina

This statement is adapted from the National Down Syndrome Congress. Feel free to copy and paste and personalize the top section to reflect your lived experience.

Comments

Parenting an Adult Child with Disabilities

"Parenting an Adult Child with Disabilities" is a series on eSpeciallyBen. As Ben approached 18, it was clear our role changed as parents. We needed to help Ben transition into adulthood. These stories are meant to assist other families who face, or will face, some of the same challenges. Talking About the Future Guest Post - Matt Wilson Legal Guardianship, Medicaid and SSI Researching Group Homes Questions to Ask at a Group Home Visit Referral Packet for Group Homes Getting Assistance from a Care Manager From Group Home Placement to Discharge Reaching for Independence How I Make Being a Mom and Volunteer Work at this Group Home

How I Make Being a Mom and Volunteer Work at this Group Home

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 ...

Parenting an Adult Child with Disabilities: From Group Home Placement to Discharge

Last August, we moved Ben into an alternative family living (AFL) placement, about 90 minutes from our home in Charlotte. It was a three-bedroom house and Ben was given the largest bedroom with its own bathroom. A typical AFL in North Carolina operates like this: a person with disabilities, the client, moves in with another family, couple or an individual. The client lives in the family’s home and the family receives payment in return for housing, feeding and caring for the client. Ben’s AFL was unusual: A couple with extensive caregiving experience wanted to run a three-bed group home but needed to apply for the license through the state. They were willing to take Ben as the first resident in a house, separate from the one they lived in. The plan, according to the couple, was to get approval for the group home within a couple of months. We ordered Ben a double bed, headboard, 54-inch television, new sheets, towels and blankets. Friends helped us move him in....

eSpecially Ben

Search This Blog