This presentation from the 2023 AACPDM Community Forum presents a model for creating a smooth transition from pediatric care to adult care for teens and young adults with cerebral palsy.
Growing up with Cerebral Palsy I often wondered if I would ever experience my happily ever after. The fairytales my mom read me always followed the life of a beautiful princess falling in love with a handsome prince. You never read about a prince and princess in wheelchairs or with any type of disability for that matter.
The hardest part of raising two children with Cerebral Palsy is the fact that we live in a world that refuses to adapt to anything beyond ordinary. And I have always -- always -- known that Benjamin and Mason were far beyond ordinary.
Students with disabilities often need extra support throughout the day to access their environment, the academic materials, and learn alongside their peers. A Personal Care Attendant in the school setting is often utilized to support the students needs.
Children and teens with cerebral palsy and other disabilities may need the assistance of an individual who has a background in healthcare and the skills to provide the services essential to quality care.
Personal Care Attendants for adults with cerebral palsy and other disabilities provide a variety of essential functions that ensure safety, health, wellbeing and overall impact quality of life.
An employment agreement spells out the rules, rights and responsibilities for both the Personal Care Attendant (the employee) and the individual with cerebral palsy or family who is hiring the Personal Care Attendant.
Author David Stoner provides insight into his experience with Personal Care Attendants through the years as his needs and his family's needs have changed.
Mental health care should be included at the outset, as part of discussions around physical, occupational, and speech therapies. I’ve seen studies on cerebral palsy’s effect on caregiver mental health — and that is important. Caregivers are part of the cerebral palsy community, too. It’s an interdependent one. There’s not enough about the nuance around how having cerebral palsy affects mental health.”
Dating can be scary, all of the questions that go through your head before a first date can often be overwhelming. What do I wear? What do we talk about? Does my breath stink? These are common concerns before any normal date. My brain was wrapping itself around the idea that this was my FIRST DATE EVER.
A year ago, I wrote in my Forbes column about the decades-long pattern of Pride Month celebrations excluding people with disabilities. The underlying reason why Pride events were (and still are) mostly inaccessible for people with disabilities, both in terms of physical spaces and social acceptance, is that mainstream media and public don’t see them having identities outside of their disabilities.
There is insufficient research on adults living with cerebral palsy, (as referenced in my previous blog post on cerebral palsy and adulthood). Although there is a paucity of studies examining mental health in this population, medical researchers have speculated that the rate of depression is three to four times higher in people with disabilities such as CP than it is in the general population.
I’m at that age when Facebook friends begin to get engaged and married, and shortly after, have children. So, I feel the pressure to proceed onto the next stage of my adulthood. But, as anyone with cerebral palsy knows, everything in life is a tad more complicated with this disability.