advocacy Archives – Page 11 of 18

November 9, 2017November 9, 2017

Down Syndrome Advocacy in Rwanda

“When my son was born my husband and I were so scared. The doctors never said Down syndrome, but you could tell something was wrong. We didn’t know anyone with Down syndrome. We were so worried.”

You could take the above quote from the mouth of just about any of the 220,000 moms giving birth to a child with Down syndrome worldwide each year. But the level of fear and worry changes drastically depending on where you live.

In the densely populated, mostly rural, tiny mountainous country of Rwanda, Edwige Musabe says it’s like Trisomy 21 doesn’t even exist. Her discovery of Down syndrome starts with the quote above; at the 2008 birth of her first born son, Yuhi (pronounced “U-ee”).

“Mental disability is invisible in Rwanda. The government doesn’t talk about these people. They’re not included. The parents don’t want to talk about it, because of the shame. They believe they’re to blame. They’re hidden in plain sight,” Edwige recently told me on FaceTime from her Rwandan home.

Related: Advocates Urge U.S. Congress to Increase Funding for Down Syndrome Research

Edwige, her husband, Gilbert, and their son Yuhi were among the very lucky. “Although we love Rwanda and will stay here, we had lived in Canada for many years and knew we would have to go there to get the answers we desperately sought,” Edwige says. There are at least 400 identified people with Down syndrome living in Rwanda. But with a population of 12 million and the statistic of Trisomy 21 affecting at least 1 in 1,000 births every year, simple math proves that number to be a low estimate.

9-year-old Yuhi is doing well, but his parents can afford to send him to a private school that accepts him. He has not received any early intervention, therapies, or medical care that most Americans with Down syndrome receive for free.

A number of troubling policies and stigmas have led to that low estimate. Rwandans must leave Africa to get an official blood test to confirm the diagnosis. Yuhi was officially diagnosed in Canada. Babies born with heart defects are turned away from hospitals there. Doctors tell them heart operations are reserved for typical children. “Parents can’t afford to send their child to India for heart surgery. Sadly, these children die,” Edwige explains. Early intervention, special education, OT, PT, speech? Nonexistent, unless you can afford it privately.

Read below to find out what you can do to help people with Down syndrome in Rwanda!

But Edwige had seen the possibilities in Canada, and wants better for her countrymen. A natural advocate, she started investigating how to start a national organization to support parents and their children with Down syndrome. She found Down Syndrome International (DSi) through Dr. Mutesa Leon, whom Edwige says is the only doctor in all of Rwanda knowledgeable about Trisomy 21.

Down Syndrome International (DSi) is a non-profit based in the United Kingdom, but serves member organizations in 23 countries including Albania, Bangladesh, Botswana, Colombia, Guatemala, Jamaica, Madagascar, Malawi, Mauritius, Myanmar, Nepal, Nigeria, Pakistan, Peru, Rwanda, Sri Lanka, Tajikistan, Tanzania, Turkey, UAE, Uganda, Zambia, Zimbabwe.

DSi Outreach Coordinator, Nathan Rowe, says they give financial, advocacy, and organizational assistance to mostly grassroots groups. “Some are made of a group of parents who meet regularly and work voluntarily, while some have a few paid staff. Generally organisations are made up of parents and family members or other people who have a personal interest in improving the lives of people with Down syndrome in their country,” Nathan Rowe explains.

Related: Social Media Gives Self-Advocate Voice

Dr. Mutesa Leon and Edwige used a small amount of funds from DSi to start the Rwanda Down Syndrome Organization (RDSO). With the money they hired a permanent secretary, and opened a small office building with a telephone in the capital city of Kigali at the beginning of 2017. “People don’t use social media in Rwanda, so radio and telephone is how you reach the most people; even in the most remote parts of Rwanda. The wealthiest radio stations have allowed us to spread our message for free. We tell listeners to call us, visit us, or go to their nearest hospital for resources, and lots of people are calling,” Edwige explains.

The first World Down Syndrome Day celebrations in Rwanda on March 21, 2017.

A group of about 100 families also met in the capital city for World Down Syndrome Day 2017. “It was an amazing experience. For the first time, we didn’t feel alone. The more people we reach, the more we can advocate, and the louder our voices will be heard” Edwige says.

Edwige says a lot more needs to be done. Donations are important, but Edwige says free expert advice on how to advocate and provide services for their loved ones would be even more affective. “My dream is to have a center for my son Yuhi and all Rwandans living with Down syndrome. They could go there for therapies, education and social interaction. We need experts to teach us about best practices. Dr. Leon is also trying to get doctors to come here to do heart surgeries to save our children,” Edwige explains.

To learn more about the other countries Down Syndrome International supports click here, and to donate to those countries click here.

If you are interested in donating to Rwanda Down Syndrome Organization specifically, please reach out to Edwige Musabe at emusabe.ed@gmail.com.

What have you noticed about the similarities and differences in caring and advocating for people with Down syndrome in different countries? Share your experiences with me below! I’d love to share your story on Inclusion Evolution!

November 2, 2017November 5, 2017

Social Media Gives Self-Advocates Voice

David Feit is a Facebook aficionado. The 39-year-old electronics firm assistant with Down syndrome has exactly 5,000 Facebook friends, and uses the social media platform like an open diary. The self-proclaimed “Funcle” (or Fun Uncle for those of you who aren’t in the know) first caught my attention by seeking me out as a friend, and then engaging me in conversation with each “Like.”

“Half of my Facebook friends I went to school with. Some are old friends, and went to school with my sister. Some friends live in my old neighborhood. I have a lot of parents with children with Down syndrome on Facebook” David described when we chatted via phone the other day.

I have about 10 teens or adults with Down syndrome that are my Facebook friends. I love seeking out self-advocates to get their perspective on Down syndrome and life in general. Only a few of those friends engage with social media in an truly independent way like David, and fewer still use it to advocate for themselves and others.

Read Related Post Here: Communication is Key to Self-Advocates’ Pursuit of Goals

“I think that David has learned a lot about the world from being able to navigate the web. He learns about people, places and things going on in the world. This is mostly the world of sports and movies, but he also reads about injustices in the world and it really upsets him and we talk about it,” explains his mother, Suzanne Feit. “David has had a lot of practice advocating too. He’s advocating for everyone in the world. There are no boundaries. He will advocate for himself, and everyone else who he thinks is being wronged.”

One of David’s recent post:

It’s obvious when you read David’s posts that they are authentic, and somehow he knows more about Facebook graphics than me. “I roll with technology changes. I’m nothing like my father, who cusses at technology,” laughs David over the phone. David’s mother started an assistive technology nonprofit when he was 4-years-old, but it was David who taught her how to Facebook. “My mother taught me and then I taught her on Facebook and texting. I’m the king of texting. I take the best picture of my nieces and nephews. I just know how to capture them. They’re my world,” David explains.

Let’s face it, Facebook and other social media platforms are here to stay. Facebook has led to the fall in power of tyrannical leaders in some countries, as well as a political groundswell in our own. It can provide a new world of independence and advocacy for people with disabilities.

Read Related Post Here: Self-Advocate Uses Fame to Spread Message of Inclusion

Especially individuals with Down syndrome, who can sometimes struggle with intelligibility. Self-advocate, John Franklin Stephens, used his Facebook account to share a testimony he gave to Congress pleading for increased funding of Down syndrome research. The thought-provoking video has been viewed millions of times, and is now spreading through the news media and social media in countries where Down syndrome is being effectively eliminated through prenatal testing. Read here.

But what about parents’ legitimate fears that social media may be misused or unsavory characters may take advantage of their child?

Advocate and parent of a teen with Down syndrome, Jawanda Mast, says those are fears all parents must face. “Our 17-year-old daughter, Rachel, wanted snap for a while and her dad helped her get that set up a few months ago. She does a lot of that on her own and has really enjoyed being able to connect to her friends. We watch her social media to be sure she is being responsible and others aren’t trying to take advantage of her. Facebook is not cool with the teenage crowd, but if she does want it we can help her with it,” Jawanda explains.

“What’s going to work on literacy more than being on the web and writing to people. I trust the universe to help and don’t live in fear. I do monitor his comments on Facebook when I see something that is inappropriate. I tell him that he must be appropriate and we work hard to help him understand that he is responsible for his actions and his words. Not much unlike the rest of the world right now, don’t you think?” David’s mom, Suzanne Feit says.

Read Related Post Here: Independence for People With Down Syndrome is Just a Click Away

My own 5-year-old son, Troy, is often better at navigating the iPad than I am. Although I limit his screen time, I realize that it’s that very same technology that will likely some day help him live independently like David. “I would encourage people with Down syndrome to have a Facebook, because you can communicate with friends and family about how blessed you feel to have them in your life,” David says.

Do you allow your child with Down syndrome to use social media or technology? How has it made them more independent or led to inclusion? How do you monitor their use of technology? I’d love to hear your thoughts below.

October 31, 2017October 31, 2017

What I Should Have Asked When My Son was Born with Down Syndrome

We had a lot of questions when Troy was born.

Troy on the right, with his typical twin and Trenton

Why was this happening to us?

What health problems will he have?

Would he be high functioning?

Will Troy ever play with his typical twin brother?

Would we ever be happy again?

All of these questions focused on how Down syndrome would negatively impact our lives. Most of them revealed my husband, Trenton, and I’s utter ignorance when it came to Troy’s diagnosis. Some of our doctors and a quick Google search didn’t help matters. They seem to perpetuate only the pathology of Down syndrome; completely missing the beautiful life and possibilities that I held in my arms.

Of course hindsight is 20/20 and the reality is, just like parenting any child, you never know how your life will change until you walk down that path. So, if I could go back to that sad, scared mama almost five years ago I’d whisper one question into her ear:

How could Troy transform our family for the better?

It’s not a question that doctors or Google could ever answer. It’s not a question that even came to mind in the midst of the overwhelming grief of what should have been. It wasn’t until I could let go of the should’ve/could’ve beens, that I realized how beautifully made my son is and how Down syndrome can open unexpected doors for myself and my family.

Acceptance of Down syndrome became our silver lining.

Ironically, we didn’t accept Down syndrome that easily. We wrestled with the idea of it constantly those first few months of Troy’s life. It wasn’t until we accepted our son, that we accepted Down syndrome. You may have heard the sayings “my son is not Down syndrome” or “when you’ve met one person with Down syndrome, you’ve met ONE person with Down syndrome.”

These sayings are at once completely true and false. It wasn’t until Troy’s personality revealed it self (that first smile, the way he looked around for his brother whenever he wasn’t near, later when he woke up early every morning just like his Daddy, or loved to bust a move like his Mama), that we realized we would be happy again. Troy is unique and ours. Down syndrome doesn’t define him, but Down syndrome has found a place in our heart and has emboldened us to live better.

Read a Related Post Here: How Having a Son with Down Syndrome Pushes Me to be “That Mom”

Our family has become champions of Troy and all people who are different or vulnerable to misunderstanding. My husband had just graduated from Medical school when Troy was born. All he saw when he looked at Troy then was health problems related to Down syndrome. Now, he sees someone who loves life in spite of all that. This has changed the way he doctors, and sees his patients. It’s made him more compassionate and caring.

I’ve fully embraced my role as lead advocate in our household. I created this blog because of Troy, and will now train as a special education advocate to help other families. Although each of our loved ones with Down syndrome are unique and different, there are issues that bind our community together. We must stand together to ensure our loved ones get the support they need to be included in every aspect of society, whether that be school, employment, or our health care system. Five years ago, I couldn’t imagine myself presenting in front of my state legislature about a bill that I advocated for, but this fall I will do just that.

Read a Related Post Here: 5 Ways You Know You’ve Become Your Child’s Best Advocate

Even Troy’s twin brother already has a sense of advocacy. Hunter gives me daily reports about what Troy did in school, and is quick to tell us what Troy is saying when we can’t decipher his sometimes jumbled words. They say siblings of individuals with Down syndrome often lead lives of service and honor, and I can see that already in Hunter’s actions.

Troy leads by example. He’s always polite and congenial. When Troy walks into a room, everyone takes notice. He’s loud and boisterous. He wants to be heard, and he will. As will we!

I don’t think much about how life could have been with two typical boys, but when I do I realize we may not have been as close, strong, and empathetic as we are now.

How has Troy transformed our family? In countless, magical ways…that’s how!

October 26, 2017October 25, 2017

Advocates Urge Congress to Increase Funding for Down Syndrome Research

We’ve learned a lot about Down syndrome since it was first identified 150 years ago, but there’s still a lot we don’t know. Now medical experts and advocates are urging Congress to properly fund research to better the lives of people with Down syndrome.

Self-advocate, national speaker and actor John Franklin Stephens urged the House Appropriations Committee on Wednesday to increase funding for Down syndrome research:

“I don’t feel like I should have to justify my existence, but to those that question the value of people with Down syndrome I would make three points. First, we are a medical gift to society. A blue print for medical research into cancer, Alzheimers, and immune system disorders. Second, a Harvard study found that people with Down syndrome and their families are happier than the larger society. Surely happiness is worth something. Thirdly, we are the canary in the eugenics coal mine. We are giving the world the chance to think about the ethics of choosing which humans get a chance at life,” Stephen’s proclaimed.

Read Related Post Here: Self-Advocate Uses Fame to Spread Message of Inclusion

If you haven’t had a chance to hear his entire testimony, it’s worth the 8 minutes! Fellow advocates in attendance told me his speech was extremely moving and brought most in the committee room to tears.

According to Global Down Syndrome Foundation CEO and President, Michelle Sie Whitten, “there’s a significant disparity in Down syndrome research funding compared to other less common disorders.” The National Institutes of Health (NIH) decreased funding for Down Syndrome from $29 million to $14 million from 2001 to 2009. Whitten says this decline happened while funding to the NIH actually increased.

DS-Connect: What You Can Do Today to Help with Down Syndrome Research

Self-Advocates like John Franklin Stephens and even my 5-year-old son, Troy, stand ready to participate in research that will improve the lives of people with Down syndrome and all of humanity. A simple way they’ve done this is through DS-Connect.

It literally took me 5 minutes to complete the online NIH health registry with Troy’s information. Families can use the registry to connect with researchers medical providers, express interest in participating in clinical studies, take confidential health surveys that researchers can use to better understand the health of people with Down syndrome. Click here to join DS-Connect registry.

Another great opportunity to get involved is the Human Trisomy Project through the Linda Crnic Institute. By enrolling your loved one, researchers can better understand why people with Down syndrome are protected from certain medical conditions while being more susceptible to others. Click here to learn more.

Why should your loved one be involved in Down syndrome research?

Because of these startling facts:

100% of people with Down syndrome will have the brain pathology of Alzheimers by age 40.

30% of people with Down syndrome suffer from immune disorders

30% of people with Down syndrome fought leukemia; while all other types of cancers remain rare or non-existent for this population.

The big question is WHY? Researching Down syndrome may unlock answers to America’s top killers.

“Despite our advocacy, funding has been flat over the past decades. Despite being the leading cause of developmental delay, our funding has plummeted while NIH budget increase” laments Whitten at yesterday’s appropriation’s hearing.

Read Related Post Here: Ending Organ Transplantation Discrimination For People with Disabilities

Executive Director of Linda Crnic Institute for Down Syndrome, Dr. Joaquin Espinosa, made the argument to committee members that increased NIH funding would also do more than help unlock clues to Alzheimers and cancer:

“There are 4 times as many people living with Down syndrome today as in the 1950s. Life expectancy has more than doubled since 1980s. People with Down Syndrome are here to stay. Simple interventions improved life expectancy. With specialized research people with Down syndrome will live longer, better lives. How much longer should people with Down syndrome wait to get their fair share of the biomedical research dollars? I think the time to act is now!”

Again, John Franklin Stephens brought the message home as a man living with Down syndrome:

“Let’s be America. Not Iceland and Denmark. Let’s solve problems and find solutions, not allow for “final solutions.” The number of people with Down syndrome is getting larger, not smaller, and so is the need. The American citizens living with Down syndrome deserve to know that their is funding and medical care available to them that allows them to reach their full potential. Let’s make our goal to be Alzheimer’s free, not Down syndrome free,” Stephen’s implores!

Members of both parties seemed overwhelmingly supportive of Stephens and other advocate’s plea for more NIH funding. The House Appropriations Committee will now move to vote on whether or not to increase funding for Down syndrome research within the NIH budget. I’ll keep you up-to-date on their vote.

Have you registered your love one with Down syndrome for DS-Connect or the Human Trisomy Project? Tell me what you think below.

October 19, 2017October 18, 2017

How to End Organ Transplantation Discrimination in Your State

Did you know that people with Down syndrome face significant barriers to life-saving organ transplants? I was shocked when I first heard that this was a “thing.” How could anyone decide one life is less worthy than another solely based on their disability?

That’s why six months ago I called my state representative, Niraj Antani, and asked him to draft a bill giving greater legal protections for life-saving organ transplants to people with disabilities. Ohio House Bill 332 was born, and recently went to the Ohio House Health Committee. You can read the bill here.

Autism Advocate, Jennifer Powers Alge, Representative Niraj Antani, and myself at the proponent hearing for Ohio H.B. 332

As the bill was being drafted I learned about a story of organ transplantation discrimination just north of where I live in Sidney, Ohio. Little Ellie’s mom was told shortly after she was born that Ellie couldn’t receive the heart transplant she desperately needed to stay alive because she has Down syndrome. Read her story below.

Read Related Post Here: Little Ellie is Denied the Heart She Needs

As soon as I connected with Ellie’s mom Jackie Ward, I knew she had to share Ellie’s story with Ohio legislators and the world. Ellie would be the change-maker! Jackie was hesitant to share at first, but over time she realized the impact Ellie’s story could have on the passage of H.B. 332. Yesterday, I was thrilled to walk the halls of the Ohio State House with Ellie and her family.

We testified in support of House Bill 332, and there wasn’t a dry eye in the committee room. I felt so privileged to give testimony in favor of Ellie and thousands of other people with disabilities that face barriers to life-saving health care. My speech gave details that included the six other states that have passed similar legislation (Oregon, Pennsylvania, Maryland, California, New Jersey and Massachusetts). Two other states (Kansas and Delaware) are currently working on a bill in their state legislatures.

We also had a fellow advocate and Autism super-mom, Jennifer Power Alge, provide the perspective of families with loved ones with Autism. Down Syndrome Association of Central Ohio Executive Director, Kari Jones, gave insight into the amazing achievements of people with disabilities, and how all life is inherently worthy of life-saving health care. But by far, the star of the show was Ellie and her mom who told her story.

Read Related Post Here: Ending Organ Transplantation Discrimination

The Americans with Disabilities Act actually provides broad protections for individuals with disabilities, but there’s no specific protection for access to organ transplantation. In fact, a group of 30 Republican and Democratic U.S. Representatives signed a letter just last year to the Department of Health and Human Services asking them to issue federal guidance to protect individuals with disabilities against organ transplantation discrimination. Unfortunately, nothing came of that letter. That’s why states need to act.

If you’re interested in advocating for a similar bill in your state I would start with the related posts above, as well as the following toolkits: ASAN Organ Transplantation Toolkit and NDSS Organ Transplantation Toolkit

I would also encourage you to watch testimony from Ellie’s mom below, as well as an Oregon mom who’s non-verbal Autistic son was refused a heart transplant in Oregon and ended up leaving the state and getting the transplant done in California. Both are extremely moving and puts a human face on an otherwise dry bill. Watch the Oregon mom starting at 38 minutes and 51 seconds here.

Our bill received a warm reception from Ohio House Health Committee members, who were also shocked that this was a real “thing.” The committee moved to the next step in the process, an opponent hearing and then a vote. So far, there as been no public opposition from transplant centers or doctors. Really the bill is not an attack on either of these institutions. There’s no penalty clause in the bill, but it does allow families to seek legal recourse to secure an organ transplant if they feel their loved one has been discriminated against. It’s more about ensuring families know they have greater legal protection to help advocate for their loved one when they need it most.

I will keep you posted on our bill as it moves forward. What are your thoughts on this issue? I love to hear from my readers, so leave a comment below or send me a private email.