Author Description

If you, like me, have a family member who lacks the intellectual capacity of an adult, this story is for you. If you have a friend who has a child or a grandchild with an intellectual disability and may need lifetime care, this story is for you. Many, many families may need government assistance to help with that care. “Nothing About Us, Without Us.” This is the battle cry of the disability movement. What exactly does this mean? Who is the “us” to which it refers? We are living in a climate where self-advocates - those with physical disabilities and mild intellectual disabilities - are making disability policy decisions about long-term care that may impact our family members’ futures. We are not a monolithic group. One size does not fit all. What about those who are so severely impaired they will require daily support for the rest of their lives? Where will they live and how will they spend their days in the community? And who decides what their community looks like? Does the parent, family member, or guardian of the person with an intellectual disability who knows them better than anyone else count as “us?” As of this moment, the answer is NO. Many of the most vulnerable people in the disability community are being left out of disability policy decision making at the state and federal level. Our voices are being silenced; we have been canceled. We must not let this happen. I'm 79 years old and live in Wilmington, Delaware where I have raised the money for, and supervised the building of, 25 four-person group homes and purchased two condos for adults with intellectual and developmental disabilities (I/DD). One of those residents is my adult son, Robert. This is my memoir and my megaphone. Some of the events detail my successes and joys, while others highlight the fears that now keep me awake at night. While I have written this with reflection, I hope you will read this with a sense of urgency. You will h