Leading Nonprofits for Cerebral Palsy

Cerebral palsy is an inherent movement disorder formed in utero by abnormal brain development, affecting muscle tone and posture throughout life. The condition can manifest in several variations known as spastic, mixed, ataxic, and athetoid. Symptoms may include one or all of the following: involuntary motion, floppy limbs, or exaggerated reflexes. Although there is no cure, treatments include physical therapy, medication, and surgery.

There are hundreds of nonprofit organizations that support raising awareness and finding a cure for cerebral palsy, but the first rule of thumb when choosing one is that not all charities are created equal. If you are interested in volunteering your time or money, it’s a wise idea to do your due diligence first so you can screen out potentially less reliable institutions. One excellent resource for finding a charity is Charity Navigator. As the world’s largest evaluator of charities, this company assigns a rating to each nonprofit based on several factors: transparency with funds, the organization’s financial health, and accountability. Some of the leading groups are as follows.

One of the most active non-profits serving the Cerebral Palsy community in the United States is United Cerebral Palsy (UCP). UCP lives to spread its mission, “A Life Without Limits,” to promote inclusion within communities, not just for people living with cerebral palsy but also for their families and caregivers. The international network of over 100 local and state affiliates was founded in 1949 and worked tirelessly to advocate, support, and educate those inflicted by cerebral palsy, in addition to other disorders, such as down syndrome and autism. Needs are met on a community basis, customized to be as effective as possible for that region. Services include employment training, in-home assistance, family support networks, and transportation assistance, among other help. 

UPC was also instrumental between the 1950s and 1970s in creating public awareness of the horrific living conditions of residents who had been institutionalized. They also contributed to the Americans with Disabilities Act (ADA) passing, which provides civil rights protections for those living with cognitive, physical, or developmental disabilities. Furthermore, UCP advocates for assistance with registering and casting votes at the polls.

The Cerebral Palsy International Research Foundation (CPIRF) is a non-profit group that focuses primarily on funding research and education and advocating for Federal support. This group was founded in 1955 and has contributed over $40 million to discover the cause of cerebral palsy, discover early diagnosis, and prevent secondary musculoskeletal complications that sometimes occur. Their fact sheet findings are shared on their website via an extensive online library.

 

The Next Generation is Reshaping Philanthropy

There is a reason it may feel like baby boomers are fading away and the millennials are taking over the world. Looking at the world population, nearly 26% are younger than 14, 16% are between 14 and 25, and 8% are older than 65. This leaves approximately half of the global population between 25 and 65. Based on data taken from financial advisors, this group of donors, known as next-generation philanthropists, is reshaping the way they handle their wealth.

One area that is already noticeably different is the level of involvement in spending and how decisions are being made. Instead of solely relying on financial advisors, next-generation philanthropists will now be giving equal time to nonprofit development experts. In addition, younger philanthropists want a more hands-on, interactive experience that will form a long-term relationship with an organization or cause instead of just writing a check. Along these lines, these next-generation donors will want to invest in companies that have deep bonds with their surrounding communities, as well. 

Rather than giving money to crisis relief funds, there is also a growing interest in funding groups that already have a foothold in areas that need help long-term, not just when disaster strikes. Smaller, independent charities are now getting support directly from funders. Another trend among next-generation donors is supporting organizations that help people become more self-sufficient and less dependent on aid long-term.

Discoveries are also being made about how to help a community truly. Taking a more in-depth look into how resources can benefit a population, altruists of today understand that literacy issues won’t be solved simply by delivering masses of books or building a school. There needs to be attention spent addressing the most basic human needs of clean water, sleep, access to electricity, and better nutrition before more significant issues like literacy can be tackled. Collectively addressing multiple community issues is more effective than putting out fires one at a time because they understand everything is connected. 

Next-generation donors also want more interaction regarding how their money is helping a cause. They prefer constant updates and enjoy promoting social media issues, so they are evolving communication strategies between donors and organizations.

 

How You Can Support Those With Cerebral Palsy

Cerebral Palsy is an inherent disorder that affects a person’s movement, posture, and muscle tone. The symptoms will start to display in early childhood and range from involuntary, exaggerated movements of the arms and legs to completely limp or rigid limbs. It’s common for people who are ignorant about this disease to confuse it with other neurological disorders. Cerebral palsy results from a combination of events either before, during, or after birth that causes an injury in a baby’s developing brain. There is no cure, only long-term treatment options such as medicine, surgery, and physical therapy. Many research organizations exist to attempt to discover what exactly causes this severe illness. 

Even without a medical degree, there are still many other ways to support a friend or loved one with this disease. The first necessary hurdle is seeing past the appearance of someone different. The misconception that you should either ignore them or pretend they aren’t different is untrue. They are aware they are unique and would gladly welcome a greeting from a new friend. Don’t be afraid to reach out and shake their hand. In addition to greeting them, ask them any questions directly. They will welcome a chance to talk to you. Even if you just want to make small talk, engage them directly instead of talking around them like they are not there. When speaking, use your words exactly as you would with a regular adult. Adults with Cerebral Palsy are not children. 

Sometimes people are insensitive without even meaning to be. A person’s wheelchair is an extension of themselves and something upon which they rely heavily. For this reason, avoid leaning on it or touching it without permission. This includes pushing someone around uninvited. 

Another way to show respect is by actively listening to what they have to say. This includes making eye contact, avoiding all electronic devices, and nodding your head in agreement. By doing so, you show them that their words are valuable and are worth just as much as every other person’s. 

People who have Cerebral Palsy are not defined by it. They are humans who suffer from it, but they are not the disease. They are also likely to have a distinct sense of humor after hearing nearly every idiom there is. If you catch yourself saying something that might seem inappropriate, they will be very accepting of your good intentions. 

How Technology Can Improve Philanthropy

Technology has improved the world in many ways by bringing us closer and making things more efficient. This is also the case for the nonprofit sector. Many of the obstacles that used to get in the way of helping causes are no longer there. One of the first ways it has been transformative is in the way people now think of the word philanthropy.

For many years, philanthropy was associated with gifts from wealthy patrons and/or large sums of money. Because technology has made giving so much easier, it is now possible to donate to a cause you are passionate about, even if you have very little money of your own. Websites like GoFundMe provide insight into details about a specific charity or person who needs help. Crowdfunding, in general, is able to harness the power of the masses in order to obtain thousands of small gifts that add up to substantial support. JustGiving is another great platform to search for a cause to support, ranging form 5K races to funding a specific community project.

In the past, philanthropists would gather at large galas to hold fundraisers or charity auctions. Unless they held blind auctions with bidder numbers, people knew who was donating or bidding. There was no anonymity. Because of the internet, it is now very easy to support as many causes as you like, free from disclosure. It also goes the other way. It is very easy to campaign for a cause you care about via social media. Many people use their birthdays as a way to increase awareness about a cause. 

If a person is shy, they don’t even need to leave their house to donate. There are mobile text organizations such as The Mobile Giving Foundation which engages with donors via a smartphone network. Some major relief efforts were obtained after natural disasters such as the earthquakes in Haiti and Japan, and the Ebola outbreak.

Unlike in the past, people who support causes want to see where their money is going and want to feel fulfilled by the results. Organizations have responded with a greater ability to inform donors exactly what the latest news is. Customer relationship management (CRM) software is a portal that lets donors receive updates and ask questions about how a cause or project is moving along. 

Making a Difference: Cerebral Palsy

Most people are unaware that Cerebral palsy (CP) is actually a term that describes a multitude of disorders, not just one. The word Cerebral refers to issues that deal with the brain, and the word Palsy refers to a person’s ability to maintain balance, posture, and movement.

The main cause of CP is predominantly due to the mother catching an infection or a virus while the fetus is still in utero. These account for 70% of the cases. Some people also attribute it to a lack of oxygen flow to the infant’s brain during labor and delivery, but that is actually a very small percentage.

A child who has CP will show signs early in childhood and they may display floppy limbs, involuntary movements, or exaggerated reflexes, to name just a few. There is no known cure at this time for CP, and most sufferers will require life-long treatment, including physical therapy, medication, and occasional surgery. For many families, these are expensive and emotionally draining times, which is why there are charities to support families who have members with cerebral palsy.

United Cerebral Palsy (UCP) is a non-profit organization that works to help families with cerebral palsy members as well as other disorders. Founded in 1949, they pioneered the idea of using fundraising telethons as a means of support. The Cerebral Palsy Foundation (CPF) is another group that not only supports people, but they do it in a different fashion by partnering with schools and the media. Reaching for the Stars is focused heavily on the science behind CP and working on ways to someday formulate a cure. 

There are also organizations that are determined to ensure adequate rights for those who suffer from disabilities. The American Association of Intellectual and Developmental Disabilities (AAIDD) was founded in 1876. Their main goals are to broaden the ability of businesses to work with individuals who have intellectual and developmental disabilities and to promote and encourage the development of a society that can fully embrace people with intellectual and developmental disabilities.

In addition to these support groups, there are numerous others that assist with the neonatal and maternal sector. March of Dimes was founded by President Franklin D. Roosevelt in 1938. The original aim was to combat polio and it was called the National Foundation for Infantile Paralysis. Since funding Jonas Salk’s life-saving polio vaccine, they have steered their focus towards preterm birth-related diseases, as well as other childhood illnesses.

Cerebral Palsy and Bad Teachers

Any parent of a child with a disability will tell you that teachers are either saving graces without whom nothing would be possible, or a parent’s worst nightmare who fails to adapt to the needs of teaching a child who is differently abled.

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A few weeks ago, a particular case went viral. Rosa Johnson is a student with severe cerebral palsy that leaves her little control of her body. Rosa’s mother Doreen had sent her to a school for students with special needs near their home in Ann Arbor, MI, where Doreen believed her daughter would be getting the best care available. However, in early November 2017, Doreen received a message from her daughter’s teacher that read “She won’t be quiet!!!!” accompanied by an image of Rosa’s mouth taped shut with blue painter’s tape. Doreen immediately looked for legal counsel and soon learned that Rosa had also been subject to other instances of abuse and neglect, including having been locked in a closet and having been slapped by a school bus driver.

As far as the US has come in our care of the physically and cognitively disabled, there are still lots of areas for improvement, and some cases continue to fall through the cracks. Lucky, the advent of the smartphone has made it easier for classmates and other adults to capture evidence of abuse, but that in and of itself won’t fix the problem. In the event that you or a loved one finds yourself in a situation where you have to investigate the way an adult or superior is treating a subordinate or student with special needs inappropriately, there are a couple of best practices you can follow.

Firstly, as Doreen did, immediately seek legal counsel. For a case as egregious as Doreen and Rosa’s, lawyers are likely to take it on pro-bono and help you find restorative justice and ensure that all liable parties are held accountable for their actions and missteps.

You can also start to collect “evidence” that may prove useful in establishing a pattern of abuse and neglect. Anyone who has spent time watching Law and Order will well know the importance of having documentation, pictures, doctors’ reports, etc., that provide concrete proof that something was amiss in the school. As tedious and uncomfortable as it may be, go back through your emails, texts, smartphone pictures, and conversations with friends.

Even if you can’t win in state or federal court, you can often win in the court of public opinion. With the blessing of your legal counsel, you can write about what happened and publish it on social media, on your blog, or try to get your story to run in a newspaper or magazine. Perhaps others will come forward with similar stories and you can spare another family the heartache and trouble that you’ve had to endure. 

Accessibility Benefits Everyone

Accessibility Benefits Everyone

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Walking up one small flight of stairs to access the entrance of a restaurant or walking down a flight of stairs to get to the subway are everyday tasks many people never question. For handicapable individuals, these simple actions are more commonly impossible. A majority of transportation, restaurants, and shops still have not adapted their entrances to suit the needs of those in wheelchairs and those using walkers or crutches. Making changes allowing everyone accesses to a certain location actually ends up benefitting society as a whole.

 

When the weather becomes harsh, sidewalks and storefronts with stairs become hazardous for all. This being said, during a snowstorm, stairs become a burden as they must all be shoveled individually whereas ramps provide an easy shape for clearing the snow. Though sidewalks commonly have breaks in them when approaching a crosswalk, they are rarely maintained. The small “lip” between the macadam and sidewalk pose challenging for those in wheelchairs, but even walking pedestrians area at risk to stumble over the irregular pattern. These small changes in busy streets can make all of the difference wheelchairs, but also lessens the risk for individuals to catch their feet and trip over the uneven surface.

 

An inability to access certain locations can pose not only challenging but life-threatening to those using a wheelchair for means of transportation. Independence is something all those with a physical handicap continuously strive for, but in order for them to achieve that, society needs to become more conscious of their efforts. Sure, strides have been taken to better accommodate those needing accessibility, but not nearly enough to break down the barrier that exists.

 

A man diagnosed with Cerebral Palsy recently conducted and filmed a social experiment, a truly eye-opening experience about the lack of accessibility that exists in this world. The man, Zach Anner, created a humorous scenario, out of a situation that was actually more tragic than anything. Zach simply wanted to visit a famous bagel shop in Brooklyn, NY and as seen in the video, a round-trip that was only supposed to take 56 minutes, took Zach over 5 hours to accomplish. Due to being in a motorized wheelchair, he faced limitations in regards to which subway trains he could access, which streets he could maneuver around, and even when he finally reached his destination, access into the bagel shop.

 

Zach’s journey opens a dialogue about accessibility not only for those who influence how cities are adapted but even for small business owners. This small bagel shop in Brooklyn is a huge tourist attraction, yet they had to send an employee outside to take Zach’s order, due to their storefront only having one large step to enter the front door and no ramp. Businesses who lack accessibility are losing customers when there is absolutely no reason they should. In Israel, a woman is fighting for more accessibility, with that same, simple mentality. An area with a large tourist income truly loses profits when they don’t provide enough handicap-friendly options. There are thousands of destinations, such as Israel, with rough terrain and vast amounts of stairs, making the adventure for those in wheelchairs nearly impossible.

Disney World has accomplished a great deal in making their parks accessible for all. On the theme park’s website, a huge list of FAQs and answers are listed in regards to accessibility. Seen here, is a list of just a few of the accommodations they have made in regards to various disabilities. Every bus that travels around the parks and hotels are wheelchair accessible, special filters on their website show you what hotels have accessible rooms, and there are ways to either bring a personal wheelchair or rent one from the park! Most sections of the park do not require stairs, and those that do, always have a ramp nearby. Take notes, rest of the world!

 

As our society continues to adapt and become more tolerant to everyone, it is important to keep in mind those needing additional accessibility, and when a set of stairs just won’t cut it. People with mobility restraints are not new to our society, and it is time proper accommodations are made for them. These changes will not only benefit those with restraints, but overall will add value to everyone from business owners, too clumsy people walking down the street.

 

The Fight for Service Animals

Alan Rasof | The Fight for Service AnimalsIt’s been a long uphill battle for people with disabilities to earn the rights to take their service dogs with them into classes, jobs, and recreational spaces like restaurants, but the movement scored a big win a few weeks ago when the Supreme Court ruled in favor of Elhena Fry and her service dog, Wonder.

The case, Fry v. Napoleon, centered around the state of Michigan’s obligations to supply a Free Appropriate Public Education (FAPE) that complied with the Individuals with Disabilities Education Act (IDEA). The school in Michigan argued that Elhena, who suffers from severe cerebral palsy, could not bring her service dog Wonder into her school because a human aid could provide all the attention and extra help she needed, as per her Individualized Education Plan (IEP). Elhena Fry’s family felt that the person who was aiding her was not, in fact, providing enough support to fulfill the obligations of the school set forth by the IDEA and consulted the ACLU for further action. The family sued the school and the principal for emotional damages for monetary compensation.

In an 8-0 majority with Thomas and Alito writing concurrences, the Supreme Court ruled in favor of the Fry family. As written on SCOTUSblog, “Exhaustion of the administrative procedures established by the Individuals with Disabilities Education Act is unnecessary when the gravamen of the plaintiff’s suit is something other than the denial of the IDEA’s core guarantee of a “free appropriate public education.’”

This is a huge victory for people with disabilities who use service animals for improved mobility. FAPE cases continue to make their way to the Supreme Court as education budgets shrivel, specifically for students with disabilities, but cases like Elhena’s ensure that the most vulnerable students have access to the best public education experience possible. With Wonder by her side, Elhena can make friends more easily, visit the bathroom on her own, and navigate the physical terrain of the school building.

The public has rallied around the cause, praising and supporting people with disabilities across social media. In December, Lowes made headlines by hiring a US Air Force Veteran and his service dog to work in their store. After his discharge, Clay Luthy started looking for a job that would be amenable to his sidekick, Charlotte, a yellow lab he’s had since she was a puppy. Lowes publically stated that Luthy was the best man for the job, and bringing his dog on board was a no-brainer.

The cause for service animals, however, is being hurt by those who take advantage of “service animal” loopholes for the sake of keeping personal pets. Most landlords who don’t allow for pets make exceptions for service animals to be more accommodating for people with disabilities. The easiest way people hide under the protection of service animals is by claiming their pets are “emotional support” animals. While it’s uncontested that animals are excellent companions for individuals suffering from depression, bipolar disorder, loss, etc., there is no legal classification for a “comfort animal,” whereas there are a lot of legal rights for animals that provide a service to those with severe physical limitations like blindness or neuromuscular problems.

Going forward, we need to encourage more protection for people who rely on service animals for independence and mobility. Service animals provide people with handicaps a freer, more “normal” life than they might otherwise have.

Food: an Escape from Disability

foodFor many young people living with Cerebral Palsy, a distant goal is independence. As we all know, CP varies in severity and expression depending on the severity of the brain damage that the individual sustained. For some, their minds are perfectly in tact but their nervous systems and muscles suffer from abnormalities of form and function. For others, though, the condition can leave them nearly incapable of ever living life independently.

One common path to independence, though? Food. For many who live with CP, the food industry provides a welcome road to a more independent lifestyle, complete with repetitive tasks, support from business owners, interactions with customers, and wages. Some large-scale operations like Whole Foods and Giant have already made commitments to hiring more individuals with disabilities and providing them with the attention and training they need to be successful. In Pennsylvania, Leg Up Farmers Market trains and employs adults with disabilities and walks them through the entire process, from farming the food to marketing and selling it to customers.

On a smaller scale, though, small businesses have a greater ability to provide those with disabilities a personalized working experience that is mutually beneficial. Whereas larger stores and restaurants entertain more customers and thus may not have time to nurture an employee with special needs, small stores, local cafes, and other good-hearted small business owners can employ individuals who may need some extra time and attention.

Take, for example, Victoria Reedy of Schenectady, N.Y. NPR recently ran a story about a young woman who lives with Panhypopituitarism, a disease that drastically limits growth hormone production and can also cause some other physical, mental, and cognitive inhibitions. Reedy struggled in school with both the content and the motor skills required to perform, but as a 26-year-old woman, she’s found new life working in Puzzles Bakery & Cafe, where she participates in the food service work and enjoys some tasks like washing dishes and

In another example, one young man with CP turned his dietary restrictions into a platform for his passion as a food critic. Alex Jenkins of Charlotte, North Carolina, lives with Cerebral Palsy, and as a result, has some pretty intense dietary restrictions. In addition, Alex experiences some limited mobility and reduced fine motor skills, so he often asks his waiters to cut his food for him. Writing under the pseudonym The Dude, Alex pens reviews of the restaurants that includes discussions of their accessibility to individuals with handicaps and their ability to accommodate him. With his mother and his caregiver, Alex regularly visits restaurants, and afterwards, he and his mother draft and post reviews on his blog, Food with the Dude. In this way, Alex has harnessed his disability into a positive, informative outlet.
For many with disabilities, food is an open door to freedom and mobility. It’s a common ground, a learning space, and a way for these individuals to earn a small income.

Representation of Cerebral Palsy in Media

RepresentationAs of late, the importance of representation in the media has been a popular rallying cry for minorities of all types. Women call on the Bechdel test to determine the level of female representation in movies and TV shows. Last year, the hashtag #OscarsSoWhite drew attention to the dearth of people of color eligible to win the prestigious acting award.

Calling for better minority representation has also extended to those with disabilities. TV shows like Degrassi and Glee have depicted young people with physical handicaps who participate in everyday life with friends who care about them, include them, and are sensitive to their limitations. Arab comedian Maysoon Zayid has performed all over the globe doing stand-up related to her life with cerebral palsy. In her TED talk, she described how she auditioned for the role of a person with cerebral palsy but was turned down in favor of an able-bodied actor. When she asked why she wasn’t chosen, the casting director told her they were worried she wouldn’t be able to perform some of the actions for which the script called. This baffled her — if she, a woman with cerebral palsy, couldn’t perform the actions of the script, maybe the script didn’t accurately portray life with cerebral palsy.

Some children’s authors and illustrators have decided to take the battle for representation upon themselves and pen books about children with special needs and disabilities to help young people learn the facts about handicaps and normalize the idea of having friends and peers who look and behave differently. Especially for cerebral palsy, which can vary in severity and symptoms, representation in children’s literature can help able-bodied children recognize and normalize the appearance of the disability in their fellow classmates.

Shaila Abdullah wrote a book in 2014 called My Friend Suhana: A Story of Friendship and Cerebral Palsy to help children understand how to be a good friend to someone living with CP. In the book, an able-bodied narrator Aanyah shows how she loves and cares for her nonverbal best friend Suhana, who lives with CP, and how Suhana has just as many abilities as disabilities. The author and her 10-year-old daughter (on whom the narrator is based) volunteer weekly at a center for children with special needs, so the two of them wanted to demonstrate in a book that love and friendship transcends disability. This heartwarming books is a must-read for any child to help foster compassion and understanding.

Aaron Philip also wrote an autobiographical story called This Kid Can Fly: It’s about Ability (NOT Disability about his own life with Cerebral Palsy. A 14-year-old African American native of the Bronx, Aaron is a disability activist and advocate for helping the general public understand the reality of living with CP and how to help others with the condition. His memoir, written with the help of Tonya Bolden, delineates his life story and how he has embraced his different life.

By including books with a healthy representation of children with disabilities in schools, libraries, and homes, we can help normalize CP and make children more open and compassionate.