A smiling group of Cerebral Palsy Research Network participants are gathered for a photo inside a conference room.

Setting a consumer-centered research agenda for CP-Mission accomplished!

 

Setting a consumer-centered research agenda for CP-Mission accomplished!

Last summer, CP NOW and the *Cerebral Palsy Research Network (CPRN) hosted Research CP, a comprehensive program designed to develop a *consumer centered research agenda for the CP community. Because of this groundbreaking conference, the CP community has a prioritized list of research topics that are meaningful to individuals with CP and representative of what people with CP care about and hope to understand.

After receiving a community engagement award from the Patient Centered Outcomes Research Institute (PCORI), CPRN and CP NOW brought together a diverse group of people to represent the CP community. The group included individuals with CP, family members, personal care attendants, researchers, advocates and CP professionals—including neurosurgeons, developmental pediatricians, physical therapists, orthopedic surgeons, several past presidents of the CP Academy, representatives from NIH, and others.

Setting a consumer-centered research agenda for CP-Mission accomplished!- 2

The program began with a series of educational webinars about research terminology and the kinds of studies that CPRN could support. We then invited webinar participants to join an online voting process where participants proposed and ranked research topics. Finally, in June of 2017 we finished our program with an in-person workshop in Chicago, Illinois. Forty-seven invited participants met to discuss the top-ranking research ideas, share their personal experiences and insights about CP, and describe their visions for the future of CP research. Since our paper has now been published in Developmental Medicine and Child Neurology, I am able to share the results with you:

Setting a consumer-centered research agenda for CP-Mission accomplished!- 4

Through our online process, participants proposed a total of 392 ideas and cast 26,798 votes. During the in-person workshop, twenty of the highest ranking unique ideas were further discussed and analyzed. At the end, we consolidated these twenty ideas down to sixteen.

The top three research ideas-summarized:

  1. Research issues on aging with CP: Participants want research to focus on how to best treat adults with CP. They also wish to understand how to treat/support children with CP in order to prevent problems that often occur later in life such as pain, fatigue and functional loss.
  2. Research the best long-term exercise/strength training strategiesfor all levels of CP (GMFCS I-V). They wish to identify what will help each group improve overall health, function/activity and participation across the lifespan.
  3. Evaluate which interventions (surgeries, injections, medications and therapies, orthotics, equipment and training) produce the best functional outcomes. These outcomes should meet family and patient goals, be sorted by GMFCS level and age, and consider the presence/impact of other chronic conditions the individual may have (co-morbidities).

The top 16 Research ideas can be found in the published article.

Themes and sentiments I took away from the experience:

As a planner and participant of Research CP, the experience was more fulfilling than I ever imagined. The passion and diverse experiences that participants shared during the program made me realize what an extraordinary community we have. There was tremendous compassion for the concerns of the entire community and an inclusive vision for the direction of CP research. Participants conveyed a strong message that all gross motor function levels and all ages, without exception, be included in the prioritized research plans. This commitment led to a final list of broader and more inclusive priority research topics than we had anticipated.

At the beginning of the workshop several individuals read personal statements about their connection to the CP community and what they hoped the community could accomplish through this effort. There was palpable vulnerability and humility among the group that I will always remember. It set a tone of collaboration and mutual respect independent of one’s professional title or personal experience. One of the orthopedic surgeons shared that he wanted to sit and listen to the experiences of the individuals with CP and their family members more than he wanted to focus on consolidating our research list. At the same time, the community participants felt overwhelmed to have a diversity of leading CP professionals so carefully consider their experience and insight. One parent, Diantha S., came to the workshop as a personal attendant for her adult daughter Amanda. She referred to herself as a “no-nonsense, stoic woman who doesn’t cry”, but through tears she said,

“I came as a personal attendant for my 40-year old daughter and I was struck that my voice was heard and I’m so glad that you have included the voices of adults and children who have lived the life of cerebral palsy—for our voices to count is overwhelming.” -Diantha S. Elementary School Principal and Parent

The toughest and most emotionally difficult part of the program for me was hearing from our adult participants. Historically there has been little research on adults with CP and their needs. From 2001-2013, only four percent of government funded CP medical research focused on adults (Wu, et al). I felt deeply upset hearing about the chasm in knowledge, support, and resources for adults with CP. Several of them described what they referred to as a “cascading loss of function” where their bodies rapidly declined prematurely as they aged. They each said they felt unprepared emotionally and medically to face these changes. I was floored by the resilience and courage they shared and the way each had adjusted their lives around these changes. At the end of our program many of the doctors, therapists and parents remarked that these personal stories fundamentally changed the way they will approach the care and treatment of individuals with CP/family members.

Setting a consumer-centered research agenda for CP-Mission accomplished!- 5

 

Beyond these stories, our Research CP  program provided me with several more take-home messages. The group repeatedly emphasized the term  Lifespan Research and spoke about Improving Participation. Participants want to see long-term research studies that follow outcomes for more than just a few years—the length of typical research studies. For example, do surgeries that produce benefits twelve months later continue to produce benefits in ten years? There were also repeated requests to evaluate treatments and interventions by how they impact function (what can they do) and quality of life and not just the details of whether a muscle is not as tight, or a bone is straighter.

Setting a consumer-centered research agenda for CP-Mission accomplished!- 6

The CP community has a lot of work ahead of it, from determining which treatments work best and for whom, to understanding the impact of treatments into adulthood. It is time for our work to move forward and CP NOW and CPRN are working to widely distribute these community research priorities and to mobilize research around these topics.

The Research CP publication has an open access status (freely available) and can be shared among professional organizations, government/policy makers, researchers and granting agencies. We encourage you to help by sharing it among the CP community and the professionals you meet. CP NOW and CPRN will continue to work with our community representatives and partner organizations, such as the CP Alliance Research Foundation, to request that research funding be aligned with these community priorities. This will help us move closer to finding answers that will help people with CP lead pain free, healthier and more fulfilling lives. The outstanding participation and feedback from this program was better than we ever hoped for and we launched a group of very motivated participants eager to learn from each other. Together we will foster meaningful change for people with CP and we have come much closer to that goal through the Research CPprogram.

What’s next?

Stay tuned because we are planning Research CP 2.0. Our leadership team had a strong desire to revisit some of the research ideas that were outside of the top twenty. The voting process favored broader research questions over more defined ones. Still, we felt there were critical issues affecting smaller populations within the CP community, particularly those with more complex forms of CP, that we needed to open up to the community for further discussion.

A special thank you to the Cerebral Palsy Alliance Research Foundation and the American Academy for Cerebral Palsy and Developmental Medicine for supporting Research CP!

Setting a consumer-centered research agenda for CP-Mission accomplished!- 7

 

Notations:

*The Cerebral Palsy research network’s mission is to improve outcomes for people with cerebral palsy through high quality clinical research and quality improvement initiatives. It includes 28 centers throughout the US and Canada that collect data on individuals during office/clinic visits.

*Consumer is used here in place of the more commonly used term “patient”.

References:

  1. Wu, YW, Mehravari AS, Numis Al, Gross P. Cerebral Palsy research funding from the National Institutes of Health, 2001-2013. Dev Med Child Neuol 2015;57:936-41.
A screenshot of a webpage search with words reading: Results For “accessibility” No results found.

A letter to my Congressman who supported HR620-The ADA Education and Reform Act

A letter to my Congressman who supported HR620-The ADA Education and Reform Act

 

Yesterday I told my South Carolina Congressman what I thought of his support and vote in favor of HR620-The ADA Education and Reform Act.  I had just received a response to my letter asking him to vote against this archaic legislation proposal. His reply detailed his enthusiastic support for its passage in the House of Representatives. Fortunately, for the time being, HR-620 has been tabled in the Senate thanks to a successful Dear Colleague letter circulated by Senator Tammy Duckworth. I do worry however, that others will try to reinvigorate similar forms of this legislation down the road and could be successful in getting it passed. It is vital that as citizens we stay informed and advocate for protecting legislation that moves us closer to creating an inclusive society rather than rolling back time and making it even harder for people with disabilities to feel engaged in life and society.

One of the most frequently cited reasons for legislators stating that we need to change ADA relates to cases of frivolous lawsuits and the notion that individuals can be awarded damages by filing ADA claims. But this is a misguided and misleading headline because the problem lies with  attorneys taking advantage of reimbursement fees available under the law–not consumer damages which cannot be collected under ADA. As disability rights lawyer Robyn Powell so eloquently states in an op ed from the May 2017 edition of Rewire.News, “Frivolous ADA lawsuits…are not an ADA issue; they are a state and court problem. Indeed, ethics rules bar attorneys from bringing frivolous lawsuits. Rather than go after people with disabilities, attention should be focused on stopping these few bad attorneys”. 

In a recent blog post from the Disability Rights Education and Defense Fund they shared more about the interests on Capitol Hill that are pushing for these changes, “They say the law is needed to help local ‘mom and pop’ shops, while behind the scenes, powerful trade associations for wealthy corporations—everything from multinational hotel chains to big box stores and corporate coffee shops—are pulling the strings in an effort to gain support for regressive rollbacks to the Americans with Disabilities Act of 1990 (ADA)”. We can work on improving the education, compliance and support measures for businesses to uphold ADA, but we cannot weaken the existing legislation and still move closer to creating the inclusive society this law was intended to facilitate.

Below is a copy of my response to Representative Trey Gowdy. Perhaps my words will not gain traction with him, but I am determined to share my point of view with my representatives and others who don’t understand the epidemic of inaccessibility that still plagues our society. I’m not looking for perfection, most of the time I just want my daughter to be able to get into a place of business and use the bathroom (but certainly we can do better than this). If we go down the path of cutting and carving our ADA legislation, which is actually aligned with many state building codes that have been in place longer than ADA, I fear we will isolate people with disabilities even further.

 

A letter to my Congressman who supported HR620-The ADA Education and Reform Act- 2

Dear Representative Gowdy,

Wow, what a poor and disappointing response. I am quite clear on what Hr 620 does and doesn’t do. Perhaps you should spend a day or a week in a wheelchair and see how inhospitable and isolating the world feels to you. As my letter stated, I am the parent of a child who is a wheelchair user. Ever day we face new construction and buildings constructed well after the passage of ADA that fail to provide the most basic access such as accessible parking, an accessible route to the place of business and accessible bathrooms. In working through these issues locally (and there are so many I could make it a full time job) I have found tremendous apathy, particularly from large developers who submit compliant construction plans to our city and then decide to cut costs and take their chances building non-compliant structures [which trickles down to their tenants having inaccessible businesses].

You are quite out of touch with the experience of people with disabilities to think that this is an appropriate course of action for a society where many business owners we meet often [but not always] feel that following ANY accessibility laws are optional. The onus should NOT be on the individual with a disability who already feels isolated and apart from their community to bring forward accessibility violations. Do you know how long it takes for me to even get someone to pay attention to me about an accessibility concern–often months, or even years! What we need are enforcement and compliance mechanisms that work. The few isolated cases where attorneys pursued cases against business owners for small infractions of the law can be handled through strategies that are created in cooperation with the American Bar Association. Plus the financial damages that were sought were specific to the state law, not the federal ADA law where no monetary damages can be awarded.

Your summary and stance on this issue are poorly articulated and carry little weight with our family and many other people. ADA has been around for almost 30 years and I don’t want to hear that business owners don’t know and shouldn’t know that at the very least their businesses should be physically accessible to people with mobility impairments. Why don’t you try being a bit more creative in handling your concerns about business owners rather than putting up more barriers to ensuring accessibility to people like my daughter? The fact of the matter is that we have a huge aging population (and you too will be there some day) and they, along with other people with disabilities, comprise the largest minority in the US. It only makes economic and social sense to ensure their participation in society without further delay.

Sincerely,
Michele Shusterman

 

A letter to my Congressman who supported HR620-The ADA Education and Reform Act- 3

A letter to my Congressman who supported HR620-The ADA Education and Reform Act- 4

**Permission for the use of the two photos of above has been granted by the photographer Tom Olin. Thank you Tom!

For more information about the myths and truths about HR620 and related accessibility stories, check out these resources:

  1. From the NY Times and opinion piece by Luticha Doucette, “If You’re in a Wheelchair, Segregation Lives”
  2.  How did my representative vote? If you don’t like how they voted tell them your story and why you want them to think about this issue differently.
  3. DREDF-Disability Rights Education and Defense Fund: offers a huge list of resources and information on HR620.
  4. The ACLU offers this excellent piece about the myths and truths of HR620.

 

 

A delighted young girl wearing a blue fleece and pink trousers is pushed in a wheelchair across an ice-skating rink by a woman

#Transitions

Maya just turned 11 and along with that birthday has been a host of emerging transitions for her and for us. She is a pre-teen now and there are emotional changes, vast physical changes, academic assessments and decisions that we need to make like how she approaches reading and writing and how we physically support her throughout the day. Birthdays are always a little hard (some more than others) as I naturally take stock of where we have come from and where we are going. As a family there is typically a realization that we must loosen our grip on some long held goals and perhaps bring others more clearly into focus, like purchasing a lift and realizing that Maya isn’t going to make transitions without one.

But in my heart I want it all for Maya! I don’t want to give up any of our goals or even place some on the back burner. And I feel a bit like a child stomping her feet and having a tantrum about it. On the other hand, my body and spirit tell me a change is in order for my health and the health of our family. There are only so many hours in a day and only so much energy we all have to go around. This emotional struggle isn’t new to me but it always creeps up every time a transition and reordering of priorities is staring us squarely in the face. And with CP, the need for flexible goals and continuous adjustments is a necessary lifelong skill for the entire family (thank you to the adults with CP who have gently imparted this wisdom to me).

As I muddle my way through some pretty intense grief and move closer to the next phase of acceptance, I find a small measure of comfort and confidence in knowing that I have been in this space before, many times now, and have successfully shed my old skin–we all have. We may have to approach our day differently, make more time to get from one place to another, or say goodbye to some of our goals, but we still find laughter, fulfillment and room for new goals along the way. On the days where the noise of my emotions is so loud that I can’t plan my next step, I know that it’s time to stop, let the wave wash over me and let the pieces of myself and my plans reorder themselves.

Here we go!

 

#Transitions

 

Much love and strength to all of you,

Michele, CP NOW nonprofit and CP Daily Living blog

An adult wears a hospital gown, holding an infant wrapped in a pink blanket, sitting in a NICU room.

Our Story

 

An adult wears a hospital gown, holding an infant wrapped in a pink blanket, sitting in a NICU room.

Many people don’t realize that cerebral palsy (CP) is often the result of an infant brain injury. Our family faced this very frightening circumstance when our daughter Maya was just 34 weeks old and one week after she was born. It was an unexpected event and scary. The worst part about it was that when I asked my husband Blake (a physician) what they do for that he said, “Nothing.” I asked him this question again wanting to make sure I heard him correctly. He went on to say, “We wait and see.” To this day these words haunt me as one of the worst injustices of infant care that affects babies and their families for their entire life, my own child included. With my limited knowledge of medicine I knew there were strict and immediate protocols for adults who have strokes and brain injuries to ensure the best possible outcomes. How could there be no protocols for our tiniest humans with tremendous potential for change? Over a period of three years this question drove me to uncover a host of serious issues that were not being addressed for the CP community.

After Maya left the NICU (six long weeks) time moved along and we wondered if we would be facing a diagnosis of CP (because “wait and see” has also been the way CP has traditionally been diagnosed). Our feelings of anxiety and tension related to observing Maya’s development were overwhelming. Would she be able to sit, walk, talk, see, hear, be able to eat, and on and on? These are skills that many parents take for granted, but for the parent of a child who has had a brain injury they hold tightly to each moment hoping their child will keep gaining skills and improving. It’s beyond painful.

I rarely discuss cerebral palsy on our blog and facebook page in the context of fear, pain or difficulty. I do this purposely because I want people to understand and to see the potential in my daughter and other people with CP (and other disabilities). But at the same time, perhaps some of you reading this may not realize why I got into this work and why I remain so committed to it. I got involved because whether you are a parent or individual with CP, this is at times a very challenging and painful road and I knew it could be better. At the time Maya was born there was no national nonprofit actively working to support people with CP and their families. When we left the NICU, I couldn’t find a resource online that offered reliable, supportive and comprehensive information. It wasn’t ok and I decided to do something about it by creating the resource website and blog CP Daily Living and eventually our nonprofit CP NOW.

There is so much work to be done for this community but CP NOW is helping to mobilize change in the areas of community and clinical education, family support and funding pilot studies to bring new treatments forward. As 2017 comes to a close, please consider contributing to our work.

See our new historical timeline to learn about our accomplishments this year and our plans for 2018.

Donate today and help us meet our December fundraising goal of $5000.00! We are just $500.00 away.

With gratitude,

Michele Shusterman, President of CP NOW and Maya’s Mom

CPRN Logo with a dark and light green ribbon next to the words Cerebral Palsy Research Network.

Growing Pains

 

Maya and me had some tough arguments today. They weren’t pretty–at all–and her Dad had to mediate between us by comforting Maya and interpreting my intentions. Maya is getting big which requires continuous adjustments to how we approach  supporting her physically throughout the day. I always try and give her as many opportunities to move and practice developing new skills (this is very important to her), but today what my heart wanted was not what my body wanted. Maya tuned into my frustration as I struggled to support her body and manage my own. My back just plain hurt and it wasn’t her fault, but I sure made it sound like it was. It was not one of my more stellar parenting moments, but it was a very human moment.

Maya cried and I was pretty upset with myself. She shouted at me, “How am I supposed to keep track of what movements hurt your back?!!” Well, she isn’t and I let her know that. I blamed her when I knew she was doing her best. She went on to cry about her body and feeling stuck in her wheelchair (which is part of why I push myself physically to give her many chances to use her body in different ways). It was very hard to remain present with her in that moment because it was painful for me to witness her pain and  know that I caused some of it by being so hard on her.

Then tonight something similar happened. I was frustrated trying to facilitate movements that are more difficult for Maya but that I think she may be able to attain with some practice. In the long run it would end one of the last transitions we have that require that we lift her. She tuned into my frustration despite my attempt to disguise it better. She became irate and I backed away and gave her space. Her dad again stepped in to try and explain my intentions. As I got her into bed I told her I was sorry and that I didn’t mean to upset her. She asked me to stay with her for a few minutes and then she said,

“As it turns out Mom I wasn’t upset with you. I was frustrated with my body and I got out of control and I am sorry.”

I told her I understood and that I was amazed she was able to process all of those feelings and ideas so quickly and honestly. When I was 10 years old I certainly wouldn’t have been so honest about my behavior and I do not know that I could have come to such a mature perspective on my own.

Ultimately, we decided on a new house rule that early morning and before bed are not good times for me (or anyone else) to have Maya practice movements that are harder for her. I think that sounds like a good plan. I know we will likely be making many more adjustments both physically and emotionally as Maya gets older. In some cases we will be forced to replace hope with acceptance as we face our limitations both Maya’s and our own. Hopefully, I will be able to negotiate these moments with a little more grace than I did today.

 

Young child with CP in a wheelchair next to an adult kneeling next to them in a Karate class.

Karate takes center stage for Maya

I have heard may ambulatory adults with CP say how much they enjoy and have benefited from karate. But, I never thought karate could be modified enough for Maya (a wheelchair user with spastic quadriplegia) to both enjoy it and physically challenge herself. She has proven me wrong once again. This year when she told me she wanted to participate in a karate class once a week, I worried Maya would be sitting off to the side and not moving much at all, while the other children practiced karate moves and played together. I didn’t push back because karate was built into her class time and I knew I could count on her to tell me or her teaching assistant if she felt awkward or left out.

During the third week of school, exhausted and moody during her after school physical therapy, Maya told me and her therapist that she was tired from her karate class that day. I thought she must be playing possum. As I watched her struggle to move, I considered the validity of what she said about being tired from karate, but quickly dismissed it. I truly didn’t think it was possible for her to exert herself so much with her upper body that she would be so wiped out. Over the next few weeks however, I realized karate provided Maya with personally meaningful challenges and more participation opportunities than I thought it would. The more I heard about  how she was challenging herself, the more I realized we had to make an adjustment to her schedule.

At first, I proposed she do less activity during karate so she would still have energy for therapy. Unfortunately, that didn’t work out because even with half of a karate lesson, she was still having trouble with her stamina and now, she was also upset that she was missing out on some of the karate class. Trying to come up with an easy solution, I half-heartedly proposed that she change therapists and therapy days if she wanted to continue. I never thought she would agree to this because she loves her therapist, she takes PT very seriously and she doesn’t like change. Imagine my surprise when she turned to her therapist, who she adores, and said, “I am so sorry C. and it’s not about you, but I need to change therapy days.” Clearly, she was serious about karate.

It took me a few days to wrap my head around prioritizing a “bonus activity” over physical therapy, but then I realized that the karate experience was as vital to her development as her therapy. Many children begin to choose activities over therapy as they get older. Pre-teens and teens want to be with their peers and do what they are doing—enjoying life and having fun instead of sitting in a therapy center with their parents and therapists. At this age, if we can find a way to balance the need for some structured therapy time with fun yet challenging activities like piano (now modified guitar too!) and karate, Maya is more likely to remain more active, healthy and happier throughout her life.

Once I got passed the initial stress of adjusting her therapy schedule and switching therapists (no small thing), I have been over the moon with the results. Maya has found a new activity she loves, her upper body is becoming stronger and her range of motion has improved tremendously. She also is enjoying the structure and discipline of the class.

From dance, to piano–where she initially required three people to support her body–and now to karate, Maya has shown me repeatedly that she has the determination, patience and hidden skills to do much more than anyone imagines (and the people around her set the bar high). She even continues to surprise her biggest champion, her Mom.

Young child with CP in a wheelchair next to an adult kneeling next to them in a Karate class.

CPRN Logo with a dark and light green ribbon next to the words Cerebral Palsy Research Network.

CP NOW will proudly participate in this year’s national STEPtember challenge

Step-promo-banner

It’s almost September and that means that international CP STEPtember challenge is almost underway! This year all of the US funds will go toward cerebral palsy research and CP NOW, our fundraising nonprofit, will be joining in the challenge. We welcome you as members of the CP Daily Living/CP NOW community to join in and help us raise money for research. We have our own registration code being used in partnership with the Cerebral Palsy Research Network (our partner in the Research CP workshop held earlier this year) that waives the STEPtember registration fee. This code, found below, also allows us to track the funds our group raises collectively.

 

Here are more STEPtember details:

CHALLENGE YOURSELF & RAISE FUNDS FOR CEREBRAL PALSY RESEARCH

https://youtu.be/HIgDxjRwI_Y

What is it? STEPtember is 28-day challenge run in 8 countries around the world, initially created in 2010 by the world-renowned organization, Cerebral Palsy Alliance in Australia and have raised $15M+ in the last 6 years. In 2017, Cerebral Palsy Alliance Research Foundation is exclusively running Steptember nationally across the US, with all funds raised going to RESEARCH for CP.

Cerebral Palsy Alliance Research Foundation is currently focused on raising funds to target the following areas:

  1. Stem cells
  2. Reducing chronic pain
  3. Thought to speech technology
  4. Prevention of CP in premature babies
  5. Deep brain stimulation

We would like to urge you, your family, friends, neighbors and colleagues to participate this year and help raise much-needed funds for CP research conducted by the best and brightest minds in the US:

  • Steptember is a global fitness initiative that challenges participants to take 10,000 steps/rolls (or using other activities that suit you) a day for 28 days: September 4 – October 1, 2017
  • In teams of up to four (but at least three), participants track their steps daily wearing a pedometer provided by Steptember
  • Results are recorded via the interactive website (http://www.steptember.us) or on the new mobile app each day
  • Participants don’t just walk to improve their fitness – there are over 40 activities from which to choose
  • Teams are encouraged to make every step count by fundraising for cerebral palsy throughout the challenge
  • All money raised will exclusively support research to accelerate important breakthroughs for cerebral palsy

We hope you’ll join us and show your support! How To Register Guide – 2017.

Create your team and register for free today at steptember.us using our exclusive code! ResearchCP2017.

CPRN Logo with a dark and light green ribbon next to the words Cerebral Palsy Research Network.

Cerebral Palsy Awareness 2017–“I am aware”

Cerebral Palsy Awareness—“I am aware”

by Michele Shusterman, CP NOW & CP Daily Living

 

mayaandmom10

I am aware that CP is the result of an early brain injury or disturbance in brain development that occurs during pregnancy, during birth or shortly thereafter.

I am aware that CP refers to a group of movement disorders that interfere with how the individual initiates, coordinates and controls movement and balance.

I am aware that CP is a spectrum condition where people require different kinds and levels of support.

I am aware that CP is the number one cause of motor dysfunction in children.

I am aware that CP impacts more than 17 million people worldwide.

I am aware that funding for CP research has been dismal for decades.

I am aware that CP affects 1 in 323 children in the US and a large adult population that is often forgotten.

I am aware someone with CP who is unable to speak often can hear, understand and have the same intellectual capability as anyone else.

I am aware that more than 50 percent of people with CP are in chronic pain.

I am aware that parents of babies at risk for CP are scared and have little guidance about what the future holds.

I am aware that some people with CP are competitive athletes.

I am aware that adults with CP have many barriers to securing employment.

I am aware that more than 70 percent of people with CP have sleep disorders (from 2016 Australian data collection).

I am aware that people with CP wish to take part in as much of life’s activities as possible.

I am aware that there are adults with CP who are neuroscientists (i.e Dr. Kathleen Friel), neurologists (Dr. Janice Brunstrom) actors, psychologists, teachers, designers, leaders, business owners, artists, volunteers, advocates, lawyers and more.

I am aware that, in addition to motor dysfunctions, some people with CP may have conditions such as epilepsy, hydrocephalus, vision, hearing and communication disorders, and problems with eating, swallowing and digestion.

I am aware that some people with CP have mental health conditions, such as depression, as well as learning difficulties and more.

I am aware that parents of children with CP must become case managers because educational and therapeutic options are so uncoordinated.

I am aware that there is ZERO US federal money dedicated to studying CP.  ZERO.

I am aware that parents of children with CP cry privately because they feel guilt and fear and are exhausted.

I am aware that parents of kids with CP will do anything to help their child reach their greatest potential.

I am aware that adults with CP need access to doctors who understand the conditions associated with aging and CP.

I am aware that some people with CP hope for a cure and others do not.

I am aware that people with CP are prevented from participating in society because bathrooms, parking, venues and doctor’s offices are still not ADA compliant.

I am aware that we are diagnosing CP too late.

I am aware that people with CP have lots of different kinds of talents and abilities.

I am aware that some parents of children with CP just wish to hear their child say “Mom” or “Dad”, or to clearly understand what they are feeling.

I am aware that the CP community is lacking standards of intervention and care.

I am aware that parents are confused and overwhelmed having to make decisions about major surgical procedures without enough research to guide them.

I am aware that, in adults, traumatic brain injuries and strokes are treated immediately whereas, with babies, we wait years to see how they develop before starting therapy.

I am aware that 1 in 3 people with CP cannot walk.

I am aware that the CP community deserves more support, access to reliable resources and research into effective treatments that improve their participation and quality of life.

I am aware that CP NOW is making a difference by developing educational resource guides, providing community support and funding pilot studies that can be readily implemented to change lives NOW.

Visit cpnowfoundation.org to download your copy of The CP Tool Kit–From Diagnosis To Understanding.

CP Tool Kit

I am aware that CP NOW needs my support to do those things.

I am aware.  Make your donation today!  https://cprn.org/donate/ No amount is too small when we all donate together!

For more information about CP visit cpnowfoundation.org and our blog/resource website at cpdailyliving.com.

CPNOWlogo

CPRN Logo with a dark and light green ribbon next to the words Cerebral Palsy Research Network.

A rough week for wheelchair access–“This is the second and last time we will be coming here!” -Maya, age 10

This week has been rough for wheelchair access. One of the resource guides CP NOW (our nonprofit-cpnowfoundation.org) is working on this year is about empowering people to advocate for access in their local communities. With lots of persistence and partnership me and another local advocate, an adult wheelchair user and ADA consultant, are opening lines of communication with business owners and code and city officials. With the cooperation of many different entities we are establishing processes to ensure basic access is provided in our community. It’s tough, and requires a lot of patience and thick skin, but it’s worth it.

advocacy

Maya and I at a local civil rights rally

For those of you who may not be familiar with what kinds of problems wheelchair users face when getting out and about each day, here are a few I can share from JUST THIS PAST WEEK (and most occurred yesterday!):

1. While visiting our new orthopedic surgeon who is affiliated with a very large hospital system, we found a parking lot that didn’t have a single handicapped space that was level or had the mandatory access aisles (striped lines). I had to lift Maya out of the car and carry her to her wheelchair at the back of our van.

2. When asked at the same doctor’s office whether we had a current weight on Maya I said “No” and asked if they had a wheelchair accessible scale. The woman said they didn’t and then laughed nervously. Maya told her it wasn’t funny. She is right.

3. Yesterday when I took Maya for her piano lesson we had to park in a private lot in order to try and safely gain access to the sidewalk because there are no designated handicapped spots or curb cuts nearby. Had I not parked in this private lot I would have had to roll her down the street against oncoming traffic, until we came upon a new curb cut on the next block. In this case I still had to push her wheelchair through grass and rocks to cut through to a small space where the city sidewalk began. She told me she was scared as she fell forward in her wheelchair because it got so bumpy.

4. The place where she has her music lesson doesn’t have a bathroom that can accommodate a wheelchair–yikes.

5. Last night we went to dinner at a new restaurant in town where the building has been remodeled and reconstructed. I mention this because new construction access issues are a hot button for me–no excuses. It was our second trip there and we knew they had access issues with parking but were willing to navigate them because Maya really wanted to eat their pizza again. This is the experience that triggered the quote in the title of the blog. When Maya had to use the bathroom (we didn’t use the bathroom the first time we were there), a manager escorted us outside and around to the back entrance of the building. She was humiliated and let him know it. She said, “This is the second and last time we will be coming here!”. The manager hung his head in shame. I was proud of her for speaking up. Me and the restaurant manager spoke privately and he told me he had already called the owner because he was so upset. Needless to say, this restaurant has been added to my list of local access projects and I am working to address variety of access issues they have.

I could provide more examples, some that are very surprising, but I am saving them for a special CP Awareness post this month about access and inclusion. As I have been saying each day on our facebook page, people with CP and other disabilities wish to have fun too. They want to be a part of society and have the same rights and privledges anyone else has. As a society we have the moral and legal (at least in the US) responsibility to ensure people with disabilities can participate in life’s activities as much as possible and have their most basic needs met. I know meeting individualized support needs is sometimes overwhelming (but sometimes it’s really easy too) and can be confusing for institutions and business owners. This is why communication, education and advocacy surrounding access and inclusion issues are vital. Most of the time, Maya and others with physical disabilities are asking for the most basic human rights–like accessing their doctor’s office, using the bathroom, being able to have school and work accommodations etc. Whenever I speak with local city officials, architects or business owners I often say, “Look, I am not asking for anything extraordinary, but for us to be able to park our vehicle, access the front door and have our daughter safely and privately use the bathroom.” “Is that so unreasonable?”. I have yet to have anyone tell me it is.  And I will remind everyone that there are multiple building codes and laws in the US that have been in place for decades that are meant to ensure access (not everyone follows them, even remotely). Believe me if every business would just have accessible parking and accessible bathrooms, we will have made a tremendous step forward in including Maya and others with physical disabilities in our society.

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Michele, CP NOW nonprofit and CP Daily Living blog

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