Tag Archives: advocacy

Meet Dr. Amy Houtrow

This year we are focused on how small actions can have big impact and we believe our Town Hall Series can have big impact in our effort to inform, engage and inspire. We are excited to have Dr. Houtrow be our featured speaker for our third Town Hall on Thursday, July 29th at noon.

Amy Houtrow, MD, PhD, MPH is a professor and the Endowed Chair for Pediatric Rehabilitation Medicine in the Department of Physical Medicine and Rehabilitation at the University of Pittsburgh School of Medicine.  She is also Chief of Pediatric Rehabilitation Medicine Services at UPMC Children’s Hospital of Pittsburgh and the Vice Chair for Quality and Outcomes.

Dr. Houtrow graduated cum laude in Health Sciences from Kalamazoo College, earned her Doctor of Medicine degree at Michigan State University (MSU) in 2000, and completed a combined residency program in Pediatrics and Physical Medicine and Rehabilitation at Cincinnati Children’s Hospital Medical Center.  She completed her Master’s degree in Public Health Policy and Management at the University of Michigan in 2004 and in 2012 earned her Ph.D. in Medical Sociology at the University of California San Francisco (UCSF) while also serving as faculty there. Her dissertation won an international award for research on childhood disability.

Dr. Houtrow’s clinical focus is caring for children with disabling conditions and improving each patient’s function and quality of life to the greatest degree possible. Her patients include children with spina bifida, cerebral palsy, rheumatologic disorders, brain and spinal cord injuries, and orthopedic, musculoskeletal, and neurological disorders and conditions.  Complementing this work, Dr. Houtrow’s research examines health care access, outcomes, and equity for children with disabilities, and explores opportunities to improve service delivery.  She has authored over 120 manuscripts for high-impact medical journals, written and edited textbooks, developed training programs for young physicians, and she is a sought-after speaker for conferences nationally and internationally.  Her work has repeatedly garnered national media attention and informed public health policy.  Dr. Houtrow serves on a number of important health policy committees and recently provided expert testimony to the United States Senate.  In 2018 she was inducted into the National Academy of Medicine, one of the highest honors in medicine.

Dr. Houtrow will focus on how everyone has a role in addressing health disparities for children with disabilities. She believes we can create a future where all children with disabilities thrive. We invite you to join us for this informative, no cost event by registering here.

Could a Colorado Private Duty Nurse solution work in PA?

by Rebecca Dean, Easterseals Social Worker

In addition to the emotional and social impacts of having a child who’s considered medically fragile, parents are often tasked with finding a Private Duty Nurse or Certified Nursing Assistant (CNA) to provide care during the day. Families across the nation struggle to receive in-home nursing care that fits their needs and expectations. Parents who hire nurses during the day while they attend work, also often find themselves coming home from work to provide continuous care to their child.

What if a program existed where parents could be hired as their child’s care provider? What if parents could bring their level of passion and attention to caring for their child’s medical needs full time as a CNA? Well, what if we told you that a program like this already exists! The only catch… it only exists today in one state.

In Colorado, they’ve developed a solution for these concerns, known as the Family CNA Program. This is a program where family members can receive free training to become a CNA for their child. The family member is then hired by a home health agency, and can be paid to take on the tasks that would normally be performed by a nurse that has been hired! When it is determined that a child needs individual nursing care, parents are given the choice to either hire a nurse or become a CNA themselves. The importance of choice in these situations is crucial and provides the families with increased self-determination.

There are many benefits to this program including: ensuring that the child is receiving the highest level of care continuously, parents not having to juggle a job while managing their child’s care, decreased exposure to viral diseases, and evidence showing a decrease in pediatric hospitalizations rates which leads to an overall reduction of healthcare costs. Qualifying parents in Colorado who are a part of this program, can receive full medical coverage for the entire family, as well as other benefits.

While this isn’t a program available to parents in Pennsylvania at the moment, the need for it still exists. The Unforgotten Families is an advocacy group that promotes the awareness and engagement around the challenges faced by medically fragile children and their families. Their mission is to advocate for a statewide Family CNA Program in Pennsylvania that will give parents the choice in either hiring a nurse, or being trained to become a CNA for their loved one.

If you’re interested in having this program started in PA, you can show your support by becoming an advocate! Share your voice of support by visiting: https://p2a.co/Kk5ylZb. You can select to receive emails and texts regarding the campaign, but it is optional. Becoming an advocate is similar to signing a petition; you are not held to any obligations. Instead, it curates a list based on zip codes, so that The Unforgotten Families is able to make a case to local legislators. For example, if 1,000 people from Philadelphia sign up to become an advocate, it demonstrates to local Philadelphia and Pennsylvania legislators that there is an interest and need for this program in these areas.

To learn more about the program, or becoming an advocate for The Unforgotten Families, please visit their website at http://www.theunforgottenfamilies.com

Young Philanthropist Group

by Tommy Berger

Easter Seals has been a rewarding part of my life for several years. I have volunteered for various clean-up days, school visits, and Walk with Me Philly events. Now I am a part of the Young Philanthropist Group.

The group was created to engage a diverse group of women and men between the ages of 21-40 committed to supporting Easter Seals programs through advocacy, philanthropy, and volunteerism. The members come from different backgrounds yet come together for the same cause. We are working to grow the Easter Seals brand by driving awareness among Gen X, Millenials, and Gen Z.

The Young Philanthropist Group is important to me because I can share my passion for Easter Seals with other individuals who care so much to spread the great work that Easter Seals has done over the many years of service.

Check out the Young Philanthropist Facebook page and see Tommy’s profile, and learn more about other members