Welcome to "Thriving with Dignity: Embracing a Person-Centered Approach to Disability."
Objectives: Listeners will understand the importance of a person-centered approach to disability, gaining insights from real-life stories, expert opinions, and innovative strategies that promote dignity, respect, and individualization in supporting people with disabilities.
Guests:
Alana Hougland, BSN ‘18, RN
Kevin Sullivan, Disability Rights Activist, Accessibility Consultant
Alana Hougland, BSN ‘18, RN: "My name is Alana Hougland. I am a graduate of the St. Ambrose University BSN nursing program. I had a few years of hospital and clinic experience before my son Mason was born.
I am now my son's full-time home health nurse. He was born several months early and had a brain hemorrhage at birth, resulting in hydrocephalus, cerebral palsy, and other medical conditions. Mason is now 3.5 years old and requires full-time nursing care to provide feeding tube support, meds, and mobility assistance. He's had six brain surgeries, spine surgery, and others. I was fortunate to be hired for Mason's home health case, so I can be one of several nurses providing care for him.
I feel that I have a unique experience from having a healthcare background and now being on the receiving end of the medical system in a complex way. I believe that because of my experience, I am better able to advocate for my child, as well as make sure the system around him is functioning as it should be. As most of us know, we have a long way to go as a collective society for optimizing healthcare for people with disabilities. My goal is to continue to advocate for the best care, safety, and accessibility for those with disabilities and their support systems."
Kevin Sullivan: "My name is Kevin Sullivan, but feel free to call me Kev. I’m just an average guy, or at least I try to be as much as possible. I'm the youngest of three children and also the only member of both my immediate and extended families to be born with a permanent physical disability.
I was born in a suburb outside Chicago with a condition known as Arthrogryposis Multiplex Congenita, or AMC for short. My condition causes abnormal fibrosis of my muscle tissue, which results in general weakness and limited range of motion in both my arms and legs. While my condition is both permanent and irreversible, AMC is neither a degenerative nor genetic condition. My life expectancy also will not be affected.
I was born in the early 1990s, less than a year after the Americans with Disabilities Act was signed into law. My right to participate in everyday life alongside my able-bodied peers was codified into law at just the right time. As a part of the first generation of Americans living with disabilities having these rights guaranteed from birth, I've experienced both the successes and the shortcomings of this legislation.
I currently work a full-time job for a technology company in the logistics industry and am able to live semi-independently with the assistance of family members and hired caregivers."
Assessing Family Caregiver Needs: Policy and Practice Considerations: https://www.caregiving.org/wp-content/uploads/2020/05/AARP-caregiver-fact-sheet.pdf
Caregiving for Family and Friends - A Public Health Issue:
https://www.cdc.gov/aging/caregiving/pdf/caregiver-brief-508.pdf
Services for Children with Disabilities:
https://childcare.gov/consumer-education/services-for-children-with-disabilities