Volume 1, Issue 4
May, 2016
FROM THE EDITOR STEPHANIE HOLLAND
What is advocacy? Google (today’s expert on everything) defines it as “public support for or recommendation of a particular cause or policy.” That’s a good starting point but those of us who love someone with an intellectual and or developmental disability tend to have a more concrete, lived experience of the word. I’ve found that, like most things, everyone has a different opinion about what advocacy means. Our definition is influenced by our perspective. For this issue, I asked five parents of teens/adults who have Down syndrome to give us their own definitions. I think you’ll see how everyone has their own path, but together we’re building “the road.” Also in this issue, we take a look at a few of the “hot topics” in advocacy today. I hope you’ll find the information on the Disability Integration Act, the division in our community over “sheltered workshops” and the struggle we’re facing trying to raise awareness about racial disparities useful. Hopefully you’ll add one or more of these topics to your definition of why #advocacymatters. My heartfelt thanks to the dedicated advocates who agreed to share with us for this issue! Stephanie
What does advocacy mean to you? As a parent of a child with learning disabilities it is ultimately my responsibility to assure my child is receiving the appropriate services to succeed. To me, advocacy means helping those that may not be able to help themselves. To stand up for their rights and wishes and to educate them on those rights. To ensure their civil rights are not being violated and to ensure they lead a heathy and happy life and are valued members of society. What types of things have you done as an advocate for people with intellectual disabilities/Down syndrome? Testified at the Capitol to reduce medical assistance/waiver parental fees. Meet with Legislators to work through issues that have an adverse impact on rights for an I/DD.
Graduated from the MN Governor’s Council on Developmental Disabilities Partners in Policymaking program which taught me the laws and what to advocate for. Am a member of the Department of Education Special Advisory Council to ensure students with special needs are receiving a quality education in the least restrictive environment. Trained our local police department on disability awareness and to help educate the officers on how to interact/react to individuals with I/DD. Head of Delegation and Coach for our School based Special Olympics Unified sports team. Founded the Peer And Leadership Society (P.A.L.S.) group in our community. Help guide parents and students during IEP meetings to ensure their IEPs are written in a positive light and include strength based goals. Run our local Down Syndrome of MN parent support group. I never stop learning and advocating for change!
P.A.L.S. is a program run by students for students and offers opportunities to open doors for ALL children to learn, live a play together along with educating on the importance of inclusion of individuals with intellectual disabilities and to build lasting peer relationships. We host game days every third Sunday of the month at the WBL YMCA. General education students host this game day for special education students. They watch movies, play board games, do crafts , play Foosball, do community service events or just hang out. Facebook: www.facebook.com/P.A.L.S.PeerAndLeadershipSociety
What kinds of things have you done to advocate for your loved one? “One of the biggest ways that I have been able to advocate for Dominique is with her school options. When we first started her school journey she was 3 years old and the school District let us know which school she was to attend. We were not provided any other options. Every school that she attended after that my wife and I were involved in taking site visits to each location and visiting with the prospective teachers and principals. My wife and I then selected which school we felt met Dominique's needs best. We did not know it then, but those decisions helped lead us to the University of Arizona and their Project FOCUS program that Dominique just graduated from this May. By the time Dominique entered high school we had decided to have her fully included in all her classes. We made that decision after her final IEP in 8th grade, so the high school did not have a paraprofessional to support her in the classroom. For the first two months of Dominique's freshman year my wife Kathy was able to support Dominique in her classes. When it came time for the District to hire a full time paraprofessional, they asked us if we wanted to be included in the hiring process. We said yes right away and we were able to select the person we felt that was the best fit for Dominique. These are just two of the ways that I was able to advocate for Dominique during her journey. Hopefully, there will be many more opportunities along the way.”
What is advocacy? “I like the definition that SEAP (Support, Empower, Advocate, Promote: http://www.seap.org.uk/ ) uses to explain what advocacy means to me: Advocacy is taking action to help people say what they want, secure their rights, represent their interests and obtain services they need. Advocates and advocacy providers work in partnership with the people they support and take their side. Advocacy promotes social inclusion, equality and social justice. For our family that means always trying to provide Dominique with more than one option and allowing her to decide what she wants to do. That can be anything from helping her to decide what she wants to eat for a meal or having discussions with medical staff that support her and explaining it to her in way that will allow her to make her own decision.
Project FOCUS — http://projectfocus.arizona.edu/
The University of Arizona’s College of Education in collaboration with school districts in Pima County is providing a unique post-high school option for students, ages 18-21, who have intellectual disabilities. Project FOCUS (Focusing Opportunities with Community and University Support) is a dual enrollment program designed to support access to University of Arizona’s academic offerings and campus life in order to increase each student’s self-reliance and employability.
E
than Saylor is a name that most of us have heard, not because of how he lived, but what his family has done to advocate for others so that our children will not suffer the same fate as their beloved son, brother, grandson, and nephew. If you haven’t heard his story, Ethan was killed by off-duty deputies moonlighting as security guards in a movie theater. When the movie Ethan was watching came to an end, he wanted to stay for a second show. Unfortunately he didn’t have the money for another ticket. Instead of listening to his personal care worker or waiting five minutes for his mother to arrive, the guards tried to forcibly remove him. In the struggle, Ethan died from asphyxia on the theater floor. Since then, Ethan’s family has worked diligently with other advocates, law enforcement, and law makers to address the issue of how first responders react to people with intellectual disabilities. The Road We’ve Shared was born out of the #JusticeForEthan movement and is but one small part of Ethan’s legacy. It includes The Commission for Effective Community Inclusion of Individuals with Intellectual and Developmental Disabilities, headed by Tim Shriver, Ethan’s Law (MD SB853) that established the Ethan Saylor Alliance for Self-Advocates as Educators, a soon to be released documentary film
and an international network of advocates who joined together for the sake of Ethan’s memory and the right of all people with intellectual and developmental disabilities to live and thrive in their community. For more information on Ethan’s Legacy visit: http://bit.ly/JFEFacebook
WHY SUCCESS IN VERMONT MAY NOT TRANSLATE TO OTHER STATES This article was originally posted in October, 2014 in response to an article published the month before in Public Source (http://bit.ly/VermontWorkshops). Our position regarding the complete dismantling of all “sheltered workshops” remains the same. We feel that all perspectives should be considered fully before we remove choices for families.
An article about Vermont’s closing sheltered workshops has been making the rounds in social media lately. It’s a very well written piece – but one that has an obvious agenda: Make people believe that Vermont provides proof that sheltered workshops should be eliminated everywhere. While I applaud the author for addressing the topic, I have a problem with how it can be (and apparently is being) misconstrued. The article starts out telling readers about a specific individual – 58 year old Bill Villemaire, who successfully transitioned from a sheltered environment to a grocery store. That’s the “hook,” draw people in by offering concrete evidence that it can be done. What the story lacks is the opposite side. Halle Stockton, who wrote the piece, then briefly described how the state Developmental Disabilities Service Division closed all workshops within four years without using the legislative branch of government: stop letting new people in, cut funding, and close the doors. We also hear about how a small state like Vermont supports the employment of people outside of sheltered environments. Vermont has a supported employment program in each of its 14 counties to help people with disabilities find and apply for jobs as well as learn the jobs. Unlike many states, the support of a job coach does not fade over time, which
helps to improve retention. Some work a couple of hours a week and some 50 hours a week. The average workweek for people with intellectual disabilities in Vermont is 16 hours, according to a 2013 Institute for Community Inclusion report. The part-time hours remain a concern for families because the individuals may not be supervised during the downtime. Dague said the state has been successful in using the Medicaid waiver to provide services to people who need more structure outside of their work hours. [Emphasis mine]
I may be unusually skeptical, but several words in this passage presented red flags: “14 counties” – That’s an extremely small number. Places we have lived, like New York with its 62 counties, and Tennessee with its 95 would have a much harder time coordinating policies and procedures. Even Maryland has 24. How would other states offer the same level of service with job coaching? “16 hours” – The average work week is 16 hours. How does that make up for full-time employment? If one of the main benefits of this program is that people earn higher wages, let’s do the math. $9.26 (average wage for supported employment) X 16 hrs = $148.16 / week. But where does the money come from to provide care
for the rest of the day? Concerns from parents are presented – and dismissed.
Which brings me to my biggest flag“Medicaid waiver” – Anyone who follows this discussion is aware that most states have tremendous waiting lists for services. Vermont does not. It is one of the few states that does not have a waiting list for services for people with developmental disabilities who qualify for their “Global Commitment to Health” waiver. “In State Fiscal Year 2013 2,767 people received DDS home-and community-based services.” Less than 3,000 people in the whole state are being served. Some states have more than that on the waiting list.
“It was a really trying time to help families understand the value of inclusion and the value of community work because they had a place of safety for their adult children and they didn’t want to give it up,” Paya said. As is typical for pro-reform pieces, parents are portrayed as overprotective fear-mongers who are so shortsighted as to not see the benefits of inclusion. We are expected to believe that all parents/advocates who don’t support this campaign are out of touch, old-fashioned, and selfish. We apparently want to stick to what’s safe – the future be damned. Luckily, the article shows us that when we are forced to comply, we see the light!
Compare the situation in Vermont to Tennessee: “There are over 7,000 persons with developmental disabilities waiting for waiver services in Tennessee.” or Florida: “There are about 25,000 people with developmental disabilities in Florida waiting for Medicaid waiver services.” The number of people on the list in each state can be misleading because it doesn’t take into account how many people are served each year or how long people remain on the list. But, the time each person sits on the list without getting any services is important to consider. How does each of these families cope with having no services, often for years, even decades in some cases?
Eventually, families’ opinions started changing. Bryan Dague, research associate at the University of Vermont Center on Disability and Community Inclusion, interviewed families of workshop participants before and after the closure. He recalled one parent who was very much opposed. Four years later, she had done a 180. She saw a “tremendous benefit” to her adult daughter getting out into the community, Dague said. “She made new friends and she started to blossom.” Another young woman who had been in a sheltered workshop began to work at a daycare, supervising the children and preparing their lunches, Paya said.
I have to admit, what frightened me the most about this article is the dismissive way opinions of parents who oppose the nation-wide shut down were handled.
“She had been nonverbal all her time in the workshop,” she said. “She started talking in her new job, and she now has great communication with her employer and the community.”
The families were initially scared for their adult children who had worked in sheltered workshops. They couldn’t envision a job in the community that their child could fill, and parents thought they’d be unsafe and lonely without their peers.
As with any group of people, there will be similarities and differences. Some may need to be educated about the possibilities of their children to change their beliefs. Others have fought long and hard for their child to be included because they already understand the benefits, not only for their own child, but for society as a
whole. Some of those parents have learned the hard way that wishing doesn’t make it so; neither do demands. New laws don’t translate to changed attitudes right away. Some of those parents have created or found “sheltered” environments that work. Some of those parents need help caring for their adult children so that they can work outside of the home and provide for their families. And some of those parents choose not to uproot their aging child from the only environment he or she has known for decades because the transition would be harmful. Some of these parents are aging themselves and would find a different routine difficult to master. Change has to come. I welcome change. However, drastic, sudden change, without taking families and the ability to provide adequate support into consideration can be disastrous. Parents of adults with intellectual and developmental disabilities have paved the way for change. Those are the parents who fought for the ADA, and IDEA. They are the people who chose to keep their children at home despite pressure from the medical community and their families to do otherwise. They suffered through the early years of mainstreaming and de-institutionalization, watching as schools, daycare providers, and community service agencies were forced to provide access to their children. There are stories there too. Stories of neglect, abuse, and tears. Stories of daily fears that their child would be harmed or bullied by the adults who were legally obligated to protect them without the desire to do so. Some of those courageous parents and their adult children have finally found a place where they belong and feel safe. A place that may not be optimal, but it works. To uproot those families who choose not to have their routine demolished is disrespectful. To insinuate that they are backwards and uneducated is down right insulting. To say that what worked in one small state can be duplicated throughout the nation - if only stubborn parents would give in - dismisses the facts of reality and lived experiences of those who would be affected. I hope that this was not the intention of the author - and concede that it very well may not have been. Unfortunately, it has been the comments and fervor of those who have been sharing it widely on social media that lead me to believe that this is how it has been taken. There are other perspectives to this situation and I feel that they are just as valid and deserve to be heard.
#AfterABLE In the Down syndrome community, there has been a long hard battle being fought in the trenches from social media, to “the Hill” to get the ABLE Act the attention it deserves. This week, the House voted to pass the bill 404 to 17. There are still some detractors (http://bit.ly/ ABLEAccount), but overwhelmingly ABLE has been touted as a “huge victory for the disability community” (http://bit.ly/ABLEAcct) While we at The Road are excited for those whom the bill helps, we also realize that it only affects those who can afford to save for the future. Many in our segment of the community – caregivers of adults – may not be able to benefit from ABLE. Yes, the bill will allow people to save resources and still remain eligible for SSI benefits; but for those who rely on SSI for everyday living expenses, savings accounts are not an option.
Things We Need In the days to come, we will post a series of articles aimed at educating caregivers and self-advocates on issues that we think are important to our specific community. These issues affect people from all socioeconomic realities.
As we look toward creating an agenda for 2015, these are some of the issues we’ll be advocating for.
#RaceAndDownSyndrome – Investigate health disparities for people of color who have Down syndrome
#BackgroundChecks – Press for strict national guidelines for home health workers
#IndependentInvestigations – Change the process for in-custody deaths involving police
#EliminateWaitLists – Reduce the often yearslong waits for disability services
#MoreChoices – Discourage loss of existing supports as a result of promoting inclusion
#Guardianship – Help train parents on available options to full guardianship
#IDDDentalCare – Create programs that address the dental health needs of adults with ID/DD
What does advocacy mean to me-“I was so fortunate to have many moms and dads who have older kids with Down syndrome to educate me on inclusive education, on the issues our community faces--like prenatal diagnosis and the push for abortions plus the basic civil rights issues we currently battle. I feel like it's our duty to pay it forward and share that information with younger parents who are coming up behind us to help them be the best advocates for their children. When their children are given the appropriate supports and education then the sky is the limit and the whole world is better off for the efforts given. “
We invite all of our followers to join the discussion and offer any suggestions on how to proceed on these items. Congratulations to all those who worked on ABLE, especially Sara Wolff !
What have I done?
What were my hopes for the show?
“I found myself repeating the same stories of Sean's educational experiences and situations where I had to advocate for him. And the things I learned about the law, how to file complaints and simple communication tools that made his education path easier for us and his teachers. I decided to write the book "Who's the Slow Learner? A Chronicle of Inclusion and Exclusion" to help them navigate the education pathway. I also provide information via my website and Facebook page.
"When Sean was cast on Born this Way my hope was that the world would get to know 7 adults with Down syndrome--removing the unknown--which in turn removed the fear surrounded by the unknown. My hopes were that parents with a prenatal diagnosis or a child of any age could see that independence can be accomplished with the appropriate supports --some need more support than others--but can still achieve independence. Born this Way is advocacy in its most influential form. Showing and not telling what can be.
When Sean was younger I had a website for parents with a prenatal diagnosis to provide them with information past what they were receiving from physicians. Today the Down Syndrome Diagnosis Network is doing a great job of that mission.�
According to Medicare.gov:
1915(c) Home & Community-Based Waivers “The 1915(c) waivers are one of many options available to states to allow the provision of long term care services in home and community based settings under the Medicaid Program. …Standard services include but are not limited to: case management (i.e. supports and service coordination), homemaker, home health aide, personal care, adult day health services, habilitation (both day and residential), and respite care. “ I recently asked members of our private group to tell me their stories. One mother said they’d been on the list for 12 years. Another mother told me that after being on the list for six years, they moved to another state. A caseworker had informed her that she would have to die before her sons would get services.
“Waiting lists.”
Is your loved one on one?
Have you heard of them?
Do you know what they are?
Nolo, a website that provides legal information, tells us where the term “waivers” comes from. Qualifying for a “waiver” is how people with disabilities receive long-term services and supports outside of an institutional setting.
“Historically, Medicaid-eligible people who needed help with things like remembering to take their medications, preparing their meals, bathing, and doing their grocery shopping would have been institutionalized (placed in a nursing home or other long-term care setting) to receive these services. The Medicaid program would not pay for those kinds of services unless they were provided in a nursing home or other institution. The Social Security Act, as amended in 1981, allowed states to create Medicaid Home and Community-Based Services (HCBS) programs that would pay for home-based services for elderly or disabled individuals. States HCBS programs must be approved by the Centers for Medicare and Medicaid Services (CMS) in a process known as a 1915(c) waiver.”
A mom in Tennessee says her son has been on the list, designated as being in “urgent need” for eight years already Personally, we move around quite a bit, and we would have to re-apply and start from scratch every time we move because each state is different. .
Nationwide, there are 268,000 people on waiting lists for home and community-based services. People on wait lists for Medicaid Waivers for Developmentally Disabled (MR/DD) programs, with an average wait time of almost 3 years. Some states have waiting lists in excess of ten years.
Many parents aren’t aware of, or don’t understand the waiver process. If parents don’t apply until their children need the services covered by Medicaid waivers, they may be in for quite a wait.
Links to individual state policies on Medicaidwaiver.org show the startling differences between the states.
A new bill was introduced into the Senate by Sen. Charles Schumer, D-N.Y. The Disability Integration Act was designed as civil rights legislation, making it illegal “for a state and insurance providers that pay for LTSS (Long-term services and supports) to fail to provide HCBS (Home and community based services) by using waiting lists, screening people out, capping services, paying workers too little for services, or the other excuses that have been used to keep people with disabilities from living in freedom.” – ADAPT.org Many disability organizations have signed on as supporting the bill, including the National Down Syndrome Congress. We believe that the Down syndrome community should join the wider disability community in supporting this important civil rights legislation.
2013 stats published by ADA-PARC http://centerondisability.org/ada_parc/index.php
Call to action:
Read up on the bill and especially why someone might oppose it: ADAPT
https://www.congress.gov/bill/114th-congress/senate-bill/2427/text
http://www.adapt.org/main.diamain.diamemo
Let our national organizations know that we support the bill: Change.org petition.
http://bit.ly/DIADownSyndrome
Contact your Senator and ask him/her to co-sponsor the bill: United States Senate – Contact your Senator
http://www.senate.gov/senators/contact/
Follow ADAPT on Twitter for updates. @NationalADAPT
I wrote a book about my son, Dude, for all to know I am not ashamed. Many Blacks believe we should hide our people and they think mothers did something wrong to cause Ds and we should feel guilty about having them. I attend events and meetings for Ds but I also attend events and parties with Dude so the 'normals' will be aware that we are 'normal' too.
“Advocacy means standing up for Down syndrome, to not be ashamed but be proud of ours and let everyone know that we are happy, we have fun and we DO live, especially Blacks with Ds.�
MY TOP 15 MOMENTS FROM BORN THIS WAY SEASON 1 They’re not overgrown children. I watched the first six episodes of Born This Way with excitement. In Season 1, there were so many great moments, teachable moments, moments that made me laugh, cry, and feel grateful to be part of this amazing community that we belong to.
Here’s my favorite 15 – some of them are personal, pieces that touched me as a mom. Some of them are about the advocacy and awareness that the show offers its viewers. Some, qualify as both.
From the very beginning of the show, we see that the cast members don’t fit the “eternal children” stereotype. In the opening sequence – Steven and Sean are in a bar, having a beer. Also in episode one, Rachel says she wants to see Ted 2. When someone asks if she can watch that one because it’s “rated double R” she replies, “Well, I’m over 30.”
For new parents As episode one closes, you can hear Sandra McElwee say why this show is important to her, and many other advocates: “A woman who just got a prenatal diagnosis of Down syndrome could watch this and see, Oh my gosh! There’s people that date, my son can get married, my child one day will have a job, will have meaningful relationships, and will have an amazing life.” Honesty / No Filter One of my favorite things about my own son is his, sometimes brutal, honesty. Sean displays the same tendency to speak his mind, no matter what the consequences. During an interview in Episode 2, he tells the interviewer:
Change/Transition is Difficult! One of the “truths” that the show communicates to viewers is the fact that transition is difficult for many people with Down syndrome. In episode 2, we see how upset Sean gets when his parents talk about moving. “It’s not gonna happen!” he says.
“Just so you know, sometimes I make mistakes.”
In episode 6 we also see how Elena struggles with change when she doesn’t want to visit her parents’ new home.
Jobs Matter One of the things that is a source of concern in the disability community is underemployment. Many of the adults in the show hold jobs or volunteer in the community. Sean lands a job at Home Depot. Steven has two jobs, one at the Angels stadium, and one at a grocery store. John volunteers at the Lucky Puppy and Megan has started her own clothing line, Megology. Rachel beams when she shows us her paycheck. The creators of the show did a good job choosing cast members who epitomize the possibilities. Humor There were so many moments during the season that the cast made us laugh. In episode 6 alone: Elena tells John:
“I don’t eat broccoli because it tastes like a tree.” Angel whispers to Christina as they leave dance class: “I got a wedgie.”
And when Megan hears that Angel is giving Christina a promise ring she calls her boyfriend out:
“Where’s my ring?
There’s so many funny moments, it’s impossible to list them all. What’s important is that viewers got to see that these young adults aren’t “suffering” with Down syndrome. They’re hilarious and for a few brief moments, the world gets to see just how much fun our children can be. Pure Joy Episode 5: Rachel’s face when she saw Adam Lambert was nothing short of amazing. As a mom, I cried happy tears. When she stood up and walked toward the stage, it was as if we were watching chains fall from her feet. With all the criticism of reality television, the scripted, “not-really -real” accusations, this was a sincere, moment, that you can’t recreate or plan. There was no way Laurie and Gary could know what Rachel would do in that situation. We all could see, and experience the pure joy of that moment. I for one am grateful the cameras were there.
Episode 6: Angel and Christina’s big moment! Another happy tears moment. How could you watch the two of them profess their love for each other and not be moved? “Mental Age?”
Christina’s parents are so fantastic! I love how they support their daughter to be all she can be. One of my favorite quotes from Mariano was in episode 2: “What’s Normal?”
“Sometimes people ask me “So what is Christina’s mental age.” Okay, that’s okay. My answer is, it depends. Her mental age to tell time, it’s about five. Comprehension, eight. Her mental age to have a relationship with a boy, she’s like a forty-year-old woman. You know, she is committed, and in a lifelong relationship.”
Steven: “People with Down syndrome have less muscle tone and balance issues which is why it’s harder for me to learn to ride a bike. I found a bike camp that is specifically designed to teach people like me to ride a bike, and I’m very excited about it!”
We all get the question. His response is the best I’ve ever heard. Support is Essential Another great thing about the show is that we get to see how the cast members are supported by different staff and community services. Employees at Leaps and Boundz help the cast learn social skills. Sean and Steven both have job coaches that help them get and keep their jobs. Elena has a “supported day specialist” and both John and Elena take classes at the Performing Arts Studio West. While many parents have talked about how well the cast members are doing, it’s important to acknowledge the level of support they receive. Join us at the 321 eConference in March where we’ll talk more about these services and how to get them for your own child. The Importance of Planning Episode 4: Love and Chromosomes The parents have a meeting where future planning is discussed. Each family is in a different stage of planning. Kris gets emotional about planning as a single mom. Joyce is nudged into talking with John’s sisters about where John would live if something happens to their parents. As an advocate and a community facilitator, this is a huge issue. We hear stories of parents pushed into desperate acts when they are faced with terminal illness. These tragedies can be avoided with planning. It’s difficult, but crucial. Self-advocates teaching people about Down syndrome
Episode 5 – Fears and Gears
Sean and Megan: The two self-advocates speak to new parents at the Down Syndrome Association of Orange County about possibilities for their children. The motto? Dream big and don’t limit me!
The Single Parent Of all the parents on the show, I most identify with Kris. Her story, about being a single parent, is one that many of us can relate to. In episode 1: “Up Syndrome” her candid reaction speaks to how our identity gets irreversibly linked with who we are as parents. Kris: “I’m Megan’s Mom.” Producer: “I imagine Megan’s Mom has a name.” Kris:“I’m Megan’s Mom and my name is Kris. When she was born, I became Megan’s mom and that the identity that I’ve had since she was born.” In episode 4: “Love and Chromosomes” the group talks about planning for the future.
Kris: “For Megan, it’s just the two of us. Her support system will be more of the system which scares me just a little bit.” “Megan has a couple of siblings, but they don’t know her you know. She doesn’t even know her dad. So when it’s time for me to make a decision about who’s going to help her financially, who’s going to help her make decisions, who’s going to care for her and love her? Um, I don’t know. Just the thought of her being alone is really sad.”
In episode 5, Kris and Laurie talk independence and romantic relationships.
about
“When I meet other mom’s of kids that have Down syndrome, I feel like you’re my people.” In a bonus clip from Episode 2: “What’s Normal” – Hiromi and Sandra have lunch together and discuss supporting their children when they move out.
NDSC Phoenix – I Was There! This is the moment that I came closest to being on the show. I was actually walking toward Sean and Sandra as they walked out toward the pool. I steered clear of the camera, but it was close.
Kris sums up how we feel and why we do what we do here on The Road in one of my favorite lines of the whole season : “You know there’s a secret club that we all belong to and there’s some connection that we have that is unspoken.”
Sean and Devon meet each other. It was one of those moments when people we’ve met online, in our little community within a community, got to meet in person for the first time – Priceless!
My number one favorite moment? Every moment John Tucker and/or his parents, Joyce and John Sr. , were on the screen!
Parent –to –parent Support A recurring theme throughout the show is how parents can support and teach each other. In episode 3, Kris and Beatriz discuss the complications of grandchildren.
From the minute I saw JT in the commercials all I could think was “YES!! Maybe John’s family can help us get the word out!” Once the show started, I fell in love with him, and his family!
From episode 1: “Up syndrome”
“The doctors asked her if she wanted to have a abortion of me.” “Even though I’m Down syndrome it didn’t really matter because my mother she said no. I’m gonna keep this child. This is my son we’re actually talking about. She sacrificed and she kept me. I could be out there dead. Your parents had gave birth to you. They wanted you as their own child. They love you. They care for you and everything you have now is very special. I’m here. I’m alive. I’m human. And that’s what we need to know. We’re all humans. We have to like, just, stick together, and stay together, and be the person that we are cause that’s what God made us to be.” “I’m here, I’m alive, I’m human.” Be still my advocate heart! He is F-A-B-U-L-O-U-S!! And then there’s Joyce, Episode 5: “I was in denial. All the sudden you slap yourself. What are you doing? Get on board. Find out what you have to do. Go through step 1, 2, 3, 4, 5 and find out what you need to do for your son. Once I did that and I went through what I needed to do, everything fell into place.” She is an inspiration.
As I ‘live tweeted’ each episode I said a little “Thank you” every time someone of color chimed in. You see, we’re in the middle of a battle here on The Road. A battle for awareness, and against apathy. A battle that could literally mean life or death for many in our community, including my son and JT. If the Tuckers can bring more soldiers into our ranks to fight that battle, I’ll be eternally grateful. The battle is about health disparities that exist in our community. Researchers have found that people of color who have Down syndrome are dying much younger than their White peers. Dr. Michael Harpold, Chief Scientific Officer of LuMind Research Down Syndrome Foundation – a leader in Down syndrome research tells us: “The dramatic differences in life expectancy and childhood survival rates for individuals with Down syndrome among different races and ethnicities in the US, as documented in the various professional research studies, very sadly lacks the wide attention so importantly deserved. These appalling differences need to be recognized and communicated by all of us together with advocacy for more in depth research studies to understand and address the underlying reasons.” We desperately need more research. For that to happen, we need more people to tell our national organizations and the research community how important it is to us. Season one of Born This Way has brought so much awareness already. I can’t wait for season two!
Season 2 starts July 26th! On A&E 10/9 C http://www.aetv.com/shows/ born-this-way
http://theroadweveshared.com/count-us-in
#RaceAndDownSyndrome What we know: A study reported by the CDC, using death records from 1968-1997, showed that people of color who have Down syndrome died at an alarmingly earlier age than their peers who were White. U.S. Census studies of the general population for the same period show that the difference in life expectancy between the races was 5.2 years for women and 7.1 years for men. In the Ds community, the difference was 30 years for Blacks and 40 for “other” minorities (including Hispanics.)
What we think needs to happen: We, as a community of concerned parents and caregivers, need to acknowledge the problem and come together to find solutions . We need to raise awareness of the problem by sharing, posting, and talking about it. New ways to collect health and death data need to be created in order to research the problem. Researchers need to be made aware of the problem so they can design and implement new studies. People of color who have Ds should be given the opportunity to advocate for themselves on this issue.
Since the study was published in 2001, little if anything has been done to address this issue (that we know of).
Local and national Ds organizations should be given the tools to broaden their presence and impact in communities of color.
The national Ds organizations are aware of the problem.
Physicians and social service agencies should be educated on possible reasons for the problem and
A new study published this year looked for possible medical causes for the disparities but found none.
One critical note: Ok, starting with my one critical note, there’s this: This year’s theme “My Friends, My Community: The benefits of inclusive environments for today’s children and tomorrow’s adults.” It so often feels like our advocacy groups, educators, and on focus inordinately about tomorrow’s adults, when today’s adults are often isolated, in the US much more than the kids. And, ironically there are WAY MORE ADULTS WITH DS THAN KIDS. Sorry, did I shout that? #MyFriendsMyCommunity: our adults need access and voices heard. Right. Now. Alright, I got that off my chest. It’s all about the steps, each step, I get it.
The Good, The Needed, The Awesome – A #WDSD16 Wrap Up By: Mardra Sikora For you other geeks out there, I will now share about our #WDSD experience. For those of you who stick with me, there is an extra special treat at the end, the nugget Marcus shared with me at the end of the day.
#WDSD16 The morning began with Ambassadors from around the world speaking to the issues that people with Ds and their families face, about opportunities, and about concerns for health and well-being. I tried to get a few tweets out here and there. This quote came from H.E. Mr. Motohide Yoshikawa:
From Webcam to Being There For the previous 4 years I have watched the United Nations celebrate World Down Syndrome Day via live webcam. The first year I watched it was the first year it launched and before I was, how shall I say this? Not vocal, outside of our own world. I did not have a blog, I was writing essays and fiction – but not yet publishing. ANYway, the point is, I don’t really know how I “found” the WDSD website and the UN webcam, but I did, and it ROCKED MY WORLD. I sat and soaked up so much information new to me about Down syndrome, the experts, the advocates, and the best part, of course, was seeing selfadvocates speak from around the globe. Amazing. I was hooked. 3-21 became a holiday to me. A learning, teaching, and celebrating holiday. This year we celebrated in NYC. At The UN. With lovely people from around the world. Sooooo much learned, people met, I listened… almost too much for words, but I will try.
These thoughts were paraphrased from the mother of Shoko Kanazawa, a young woman advocate and artist from Japan who spoke at last year’s event: (SO beautiful, I cried watching her video last year. Just gorgeous.)
I appreciated the sentiment of the UK Ambassador H.E. Mr. Martin Shearman who said, “I encourage you to bring this back to the UN, to be sure they are making progress.” He referenced the UN commitment to all members of the human family. I like that phrase, the human family.
Then we heard from the president of the Down Syndrome International, Dr. Surekha Ramachandran. I got to listen to Dr. Ramachandran last year live, online via the 321 eConference. I felt honored to be in the same room with her. I swear, just hearing her as she pointed to the difficulties and the “long journey ahead” to creating societies where people with Ds are not only In the community but Of the community really impacted me, “Right in the feels” as the young people are prone to say. Dr. Ramachandran used the phrase, a “receptive society.” Then noted that, “Fundamental positive change in attitude from around the world is required.” Yup. She also noted that evidence has shown time and over again that “The cost of exclusion is always much higher.” The Real Deal Joanna Hajduk Then followed my favorite part, when we heard from self-advocates. The first was from Poland. Joanna Hajduk took the microphone. She spoke her speech then would break for her translator. I tried to catch, but it doesn’t do justice to the way she beamed at the end of each of her segments. I don’t speak Polish, but I do know pride when I see it. Well deserved, Joanna. Thank you.
http://www.lejournaldupaysyonnais.fr/2016/04/01/antoinefontenit-ambassadeur-des-trisomiques-21-a-l-onu/
Antoine Fontenit Antoine Fontenit, from France, told us, “I have Down syndrome and I want my rights to be recognized.” Adding, and including, “I have the right to decide about my own life.” He also pointed out that, “I believe that each one of us can help others.” Then he urged teachers and employers, “To trust us. It pushes us to learn.” Anna Rose Rubright. The last self-advocate to speak on a panel was Anna Rose Rubright. (You would maybe have recognized her from this year’s video event, “How do you see me.”) She gave evidence of the importance of advocacy for herself and others, and she talked about working hard, making change, and seeing the goal. I appreciated this quote, “I am hard working. I love to contribute, but many employers see my extra chromosome before my work ethic.”
Aleksandar Matowski We heard from Aleksandar Matowski, a selfadvocate, poet, student, and more from the Republic of Macedonia.
www.startingwithjulius.org.au/834-2/
Self-advocates from Poland, Ms. Dorota and Joanna Hajduk / photo. Karina http://nowyjorkonz.msz.gov.pl/en/ poland_in_the_un/speeches_and_documents/
Her advocacy notes included a three-point plan: 1) Demand Respect. 2) Stay Focused. And 3) Long Term.
Can you even imagine? I’m a little weepy thinking about it.
Of course, that is only one of the many – many – many nations and cultures that still…Oh.
Good advice.
And yet, the world is also so small.
These notes are brief compared to a day’s worth of information. The good news is this – You can watch all of this! The WDSD Conference website has 2 videos, the morning and the afternoon session, for everyone!
We met old-new friends. Thank you to our Hayley in the UK, we met Catia and her daughter Laura from Australia, and we pretty much “Closed the UN” – you know, the last ones out of the room and then the building. We got to spend some other lovely times together including making a new friend from Italy, too! So GREAT!
https://worlddownsyndromeday.org/wdsdconference Three More Takeaways: I have three more gigantic takeaways that impacted me. One 1) One of the speakers used the phrase, “The dignity of risk.” Oh snap. Now it’s personal. Right at that moment I felt the finger of the universe pointing at me, “Come on, Momma, you’re going to have to take some steps together, sure, but you’re also gonna have to loosen that grip a bit…” But it’s harrrrrrdddd, I said. “I know,” said the universe, “So what?” and like any good argument, I have played it over and over in my mind. Two 2) Nothing like a meeting at the UN to reflect how incredibly GIGANTIC and how incredibly small this world is. The beautiful woman who took the time to chat with Marcus and I about her work in Malawi. Where children are hidden from the public eye and parents so often believe that having a child “like this” is a punishment from God, for what? She has so much love and hope and faith in the simple fact that every child can learn and every person deserves to be loved, and she works against the tide every day.We gave her a copy of Black Day to take home and show the children and families about possibility.
The Best One, Of Course 3) What Marcus had to say. OK kids, you’ve held on this far, good work, because now I will give you the best treat of all. We get to learn, yet again, from Marcus’ perspective. If you can’t tell from this so far, it was a long day. It was talking heads from morning until late afternoon. We did sneak out a little early for lunch and walked the premises a little to keep our blood pumping. I plied him with caffeine as much as he would accept, having made the decision to cut down on pop. People talked and talked and talked all day long. Plus, it wasn’t all good, ya know. There are problems and science and culture and, well, some of it was hard to hear. It was hard for me, I can only imagine what Marcus thinks and feels when bombarded with all of this circling around the words “Down syndrome.” Then, at the very end of the day, as it all wrapped up, he told me.
After last speaker finished up, Marcus turned to me and said these words: “The problem is awesome.” I repeated it, to make sure I heard him correctly. “Yes.” He said. I took a deep breath. I’ll let you sit with his wisdom, perfectly summed up, as only he can and does. The Problem. Is. Awesome. #WDSD16
What kinds of things have you done to advocate for your loved one?
Advocating for my son, Zyon (14 years old) has been a learning process and journey. As parents, we are constantly advocating and being a voice for our children. Some of the things I’ve advocated for over the years is assuring that he is getting adequate therapy and being a voice for him during his IEP meeting. Over the years, I’ve spoken with parents who think advocating means “fighting,” but that is not always the case. It can be as subtle as calmly letting someone know that something they said was offensive. I have learned over the years that not everyone who says or does offensive stuff is aware of the error of their ways. So, I try to give people the benefit of the doubt.
What does advocacy mean to you?
The dictionary defines advocacy as public support for or recommendation of a particular cause or policy. I believe there are different levels of advocacy whether it is someone self-advocating, a parent advocating for their child or public awareness. I believe all parents are, or should be, advocates for their child. Advocacy is vital to the future of our children’s education, therapy, and for the betterment of their future.
Yvonne also created The Rise Awards to honor and celebrate the accomplishments of adults who have Down syndrome. Read the eMag for all of the details about the 2014 awards: www.theriseawards.com
“Like” them on Facebook to find out about this year’s awards. https://www.facebook.com/hyhriseawards/
Years ago, Zyon auditioned for and participated in his elementary school talent show. Zyon’s a Georgia Special Olympics athlete in soccer summer games and basketball winter games. Zyon is an orange belt in karate. His participation and being included in various activities is not only empowering to him it’s another form of advocacy through showcasing his abilities and what is possible.
To me, advocacy is about voice. So many people, because of race, disability, poverty, or sex, have less of a chance to be heard. Their voices are left out of the conversation, even when they are the subject of discussion. Those with power make decisions for them, without even asking them what they think. It’s up to those of us who can, to make sure that we speak WITH, rather than ABOUT, those we love and advocate for . That’s one of the reasons I started The Road We’ve Shared. I’ve been in positions of privilege, and I’ve been ignored. I understand the difference that perspective brings to any topic because I’ve been on both sides of the street at any given time in my life. One of the guiding principles of The Road is to respect each and every person’s truth without judgement. To me, that’s the basis of advocacy and without it, you’re just pursuing your own agenda.
STEPHANIE HOLLAND
And Joshua
Part of my own journey with advocacy includes learning. In order to be the best advocate for my son, and others, I went back to school to learn about things that are important for creating change in the world; you have to understand what you’re trying to change before you act on it. Josh and I are what you’d call “lifelong learners.”
We learn something new every day! The Road We’ve Shared is our tool for sharing what we’ve learned with others and learning what others would teach us. If knowledge is power, then we’re growing stronger every day!
KEEPING OUR LOVED ONES SAFE – BACKGROUND CHECKS FOR PERSONAL CARE WORKERS By: Stephanie Holland Like many services that families of people with disabilities depend on, regulations regarding background checks are set by the individual states. Unsuspecting families may be told that all workers must pass a “background check” but depending on where you live, that could mean a host of different things. The figure below from a recent government study shows the variety of state policies.
Statewide, National, or NO Checks According to the data, 10 states don’t require any background checks at all while the remaining states have a mixture of statewide checks and national (FBI) screening.
State Requirements for Conducting Background Checks on Home Health Agency Employees, OEI-07-14-00131 http://oig.hhs.gov/oei/reports/oei-07-14-00131.pdf
The differences even reach down to the level of what types of jobs require pre-employment screening, what types of convictions disqualify someone, and whether or not a person can start working before the check is completed. (Disability Scoop – June 6, 2014) http://www.disabilityscoop.com/2014/06/06/ background-checks-optional/19421/ This data comes from part one of a two part study commissioned by the Office of the Inspector General (OIG). The second part, published in May, 2015, was titled Home Health Agencies Conducted Background Checks Of Varying Types. “The evaluation is in response to a congressional request for the Office of Inspector General (OIG) to analyze the extent to which HHAs employed individuals with criminal convictions and whether these convictions should have disqualified them from HHA employment.” (National Association for Home Care & Hospice, May 27, 2015) http://www.nahc.org/NAHCReport/nr150526_1/
employees. Under the program, prospective “direct patient access” employees in any of 10 provider types (e.g., HHAs) must undergo fingerprint-based statewide and FBI background checks, as well as checks of State-based registries of abuse and neglect. CMS began awarding grants to States in September 2010. As of April 2015, CMS had awarded grants to 25 States, totaling more than $50 million.” After the second report was published, words like “recommend” and “encourage” were tossed around in connection with providers who are paid with Medicaid and/or Medicare dollars. For parents and caregivers however, the waters are still muddy when it comes to understanding the rules and having faith that the people who are hired to care for their vulnerable loved one have been fully vetted. Considering the political climate today, anything is possible when it comes to policies enacted through the Affordable Care Act. As recently as March, 2016, a group from New Hampshire who insures HHA’s warns about the different state regulations and offers several “best practices” that go above and beyond current rules:
(Manchester Specialty Programs http://www.manchesterspecialty.com/homehealthcare-providers/background-check-onhome-care/)
Changes Coming (?) “The Affordable Care Act established the Nationwide Program for National and State Background Checks on Direct Patient Access Employees of Long-Term Care Facilities and Providers (National Background Check Program). This voluntary program awards grant funds to States to conduct background checks on prospective long-term-care
Federal guidelines is something our community should consider advocating for. Until then, the bottom line is that families need to do their research before hiring any staff.