by Sue Lowenstein, MSPT, Physical Therapist 

Well, “The Cardboard Fairy” has done it again! She helped give another child at Easterseals a set of wings by putting her engineering skills and ingenuity to use!  This time, the Cardboard Fairy tackled the issue of a walker that needed some additional support.  

Let me back up a little for those of you that have not read our previous blogs (here, here and here) about the  “Cardboard Fairy.” Her real name is Dorothy Hess. Dorothy is a retired market researcher who volunteers for Easterseals in a very unique way. She uses heavy duty cardboard (sometimes referred to as “tri-wall”), along with various straps, glue, PVC pipe, clips, and whatever other materials might be necessary to create custom-made adaptive equipment.  

Now, let me introduce you to my student, Kayla. She is a sweet and social 4 year old girl who wears purple glasses and has a head full of curls and a smile that can light up a room. Kayla has been attending our approved private pre-school program in Levittown since September of 2020. When Kayla first started preschool, she needed a full wrap-around chest support, along with the sturdiness and width of a gait trainer, to walk. However, as time passed, she approached the point where she was outgrowing this gait trainer. While a larger sized gait trainer could have been ordered for Kayla, it would have been significantly larger and cumbersome. These gait trainers do not fold, which would make it very difficult for her parents to transport it from place to place.  

As her physical therapist, I was eager to help Kayla transition to a more traditional style and smaller walker (and one that is foldable!). However, Kayla was still reliant on the full back support that the gait trainer provided her. Many attempts to have Kayla walk in a traditional reverse walker without a back support were unsuccessful. Even though Kayla was strong and balanced enough to walk with this type of walker, she craved the back support that the Rifton gait trainer afforded her. But there were no reverse walkers available on the market that  came with larger back supports like the one that Kayla needed. 

So I tried my best to create a custom back support. I used pool noodles (PT’s and OT’s love these things), along with some extra cardboard, tape, and cable ties to try to create a custom back support that would be mounted a traditional reverse walker. However, it did not take long for the cardboard to bend and the tape to fall, resulting in an epic fail. 

I decided that this was a job for the Cardboard Fairy! With permission from Kayla’s family, and adhering to Easterseals’  COVID protocols, we were able to bring Dorothy in to sneak a peek at Kayla and my sad attempt at building a back support. Dorothy took some measurements, and left our school with the walker in her hand.  Just a few short days later, what to my wondering eyes appears on my phone but a video of a lightweight but sturdy back support designed to fit perfectly onto the reverse walker.  It is made out of the tri-wall I mentioned above.  It snaps easily into place onto the walker, and there are two additional straps to help it remain stable and in place for Kayla when walking. It can also easily be removed to allow the walker to be folded and transported by her caregivers. And to top it all off, Dorothy painted it purple to match the color of the walker and Kayla’s glasses!!! 

Kayla’s parents and Dorothy and I are thrilled to report that Kayla took to this back support and the walker very quickly, and she is now WALKING INDEPENDENTLY all around her home and in the hallways of her preschool. The Cardboard Fairy did it again…she gave another child a set of wings (this time in the form of a purple back support) so she could take off!!! Well done, Dorothy. Kayla…you keep on walking, girl!!!!  

by Adrienne Aiken

I became a part of the Easterseals family in 1999. In 2000, I wanted to find a way to celebrate the Bucks County Division staff and let them know that they are appreciated. I reached out to our families that we service in the community and in our Approved Private School, to see if they would be willing to write a letter to say “thank you” as part of Staff Appreciation Week. We provided a colorful piece of stationary to families and they responded by sharing their love an appreciation on paper. The letters were hung in the hallway for staff to read and the response was better than I could have imagined. There were smiles, tears of joy and laughter in the hallway as staff read through the letters.  Some parents shared with me that this project was the first time they wrote anything about their child’s special needs and that it was cathartic for them. Since then, I have continued the tradition and kept every letter given to us.

The pandemic has been quite a challenge for all of us and I struggled with how I could provide some sunshine to staff this summer. I decided to pull out the binder with all of the testimonials from our Easterseals’ families that were collected since 2000, and hang as many up in the hallway as I could. The hallway is currently labeled as “The Hall of Thanks,” for the rest of the summer.

 Hopefully seeing the old pictures of the little faces, artwork and hand prints that families added to the letters, will bring smiles to all everyone that reads them.

by Rachel Meade

After discussing the sensory mat idea with our PT, I figured I could definitely make one.

Making one was very easy and could definitely have been less expensive then what I spent on making it. All the items could have been purchased from the $1 store except the mat.

With my sons sensory issues he likes and dislikes so many things, so this multi-experience mat is perfect. He thoroughly enjoys running his hands over each section and rubbing his feet on certain ones as well.

The pipe cleaners, which are soft but still a little prickly, are his favorite. He is very intrigued by the sandpaper. The rainbow robe is confusing to him because it is hard when you step on it but nice to rub. He loves the Brillo pads for his hands or feet and he likes to pick off the felt furniture dots.

This whole mat only took me about an hour to make once I collected all the items!!

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.

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