The Road We've Shared - The RoadMap Blog

Acceptable RIsk?

Sun, 12 Jul 2015 00:31:16 GMT

By: Stephanie Holland

This week another story of an adult who has Down syndrome gone missing came across social media. The 35-year-old woman was found, nearly a week later, but her story brings up more questions about what is "acceptable" risk when it comes to our loved ones.

The Dignity of Risk

Denying the mentally retarded exposure to normal risks commensurate with their functioning tends to have a deleterious effect on both their sense of human dignity and their personal development. In addition, the removal of all risk diminishes the retarded in the eyes of others.

Perske, Robert."THE DIGNITY OF RISK AND THE MENTALLY RETARDED," MENTAL RETARDATION, Vol. 10, No. 1, February, 1972.

As parents and caregivers, part of our job is to keep our loved ones safe, regardless of how old they are. It can be tricky trying to balance between being overprotective and justifiably cautious. Perske coined the phrase "dignity of risk" in the early '70's but it's still one of the most difficult concepts in caregiving for parents of children with intellectual disabilities.

Missing

From WSOC 9

CHARLOTTE, N.C. —

The Charlotte-Mecklenburg Police Department said that a 35-year-old woman with Down syndrome who was reported missing was reunited with her family Thursday night.

Zakia Luck was last seen leaving her home to go uptown to watch fireworks on July 4.

The incident was reported on Monday on Sedgeburn Drive.

Luck functions well despite having Down syndrome, according to the CMPD news release.

The family was concerned for her safety because when she feels she has done something wrong, she will turn her cellphone off, and did so in this instance.

In November, Luck was reported missing and was found safe.

First and foremost, I'm relieved that she has been found.

There are, however, a few things about this story that concern me. According to the article, this is the second time in less than a year that this woman has been reported missing. I wonder if that fact had anything to do with, what seems to me to be a delay in asking for help. She was last seen on Friday evening and wasn't reported missing until Monday.

Part of me cringes at the phrase used in both reports (July and November): "Luck functions well despite having Down syndrome." The November article clarifies the statement by saying that Zakia is "independent" and has a job at a local senior center.

This language brings me back to Perske's assertion that the level of acceptable risk should be "commensurate with their functioning." Personally, I'm not sure where we draw the line. And, at what point do we run the risk of being compared to "free-range parents?"

I'm not one who usually worries about what other people think. But it's not unheard of for people to blame the parent when something tragic happens, no matter how completely unpredictable the event may have been.

Mardra wrote about one such incident where the accuser considered his opinion newsworthy - and so did the editor of the Frederick Post.

The wounds came open again when a few days ago Gary Jenkins, the brother of the sheriff of Frederick County Chuck Jenkins, publicly blamed Patti Saylor for her son's death because it was she who allowed Ethan to be in the community. His letter to the Editor of the Frederick News Post stated that, "She should have known better to send him out in public." Apparently, Jenkins believes that Patti Saylor should have somehow considered the possibility that her son's trip to a movie theater would lead to the fatal circumstance of three off-duty officers forcibly bringing her adult son with Down syndrome to the ground, resulting in a crushed larynx, asphyxiation, and the devastating conclusion: homicide.

From According to Jenkins, Best to Keep a Person With Down Syndrome at Home (Huffington Post)

It's not just about traveling independently, or even whether or not our loved one is active in the community. It can be something seemingly simple like food choices. Elspeth Slayter Recevik, PhD, MSW explains it pretty well in an article about caregiving for her adult sister called "Twinkies for Breakfast: Implementing the Dignity of Risk with Adults with Intellectual Disability."

"It's my human right and you can’t stop me,” she said loudly, her back stiffening.

Recevik is concerned that her sister is pre-diabetic and needs to make better choices about what she eats. Since she identifies herself as "adamant advocate for self-determination for people with intellectual disabilities," she can't bring herself to override her sister's wishes.

These are the every day situations where the rubber hits the road so to speak.

How do we know how much risk is acceptable. If Recevik's sister ends up with severe diabetes down the line will she regret giving in to her sister's demands for snack foods?

If Zakia continues to go missing, how long will it be before authorities step in, or worse, what if the next time there isn't a happy ending?

These are the hard decisions we have to make every day that we're blessed with the company of someone with an intellectual disability.

Sometimes there are compromises that can be made. Sometimes we can gently guide our loved ones and help them make better decisions.

All I can say is that we all do the best we can with what we know.

Stay safe friends!

Phoenix Recap – NDSC15

Thu, 02 Jul 2015 02:03:49 GMT

By: Stephanie Holland

This year the annual NDSC convention was held in sunny Phoenix, Arizona. The 100+ degree weather made things outside of the conference venue a bit sticky, but inside everything was “cool.” If I had to sum up my own experience this year I would use these three words: collaboration, friendship, and hope.

As you can see from the picture above, our table in the exhibit hall did triple duty this year – Jennifer Smolka was gracious enough to share her spot for 321 eLearning with The Road and Marianne from Joey’s Ups with Downs. We all work together throughout the year on webinars and the 321 eConference, and at the NDSC gathering we got to work side by side.

Jennifer, Marianne, Mardra, and I got to be all together in person for the first time!

Around the corner, we were celebrating the release of “Black Day – The Monster Rock Band” written by Mardra’s son Marcus.

It was a BIG hit and Marcus did a great job autographing his books and helping to sell them!

Lots of little people enjoyed the trailer for the animated short film that will be released soon.

We also got to take our picture with a member of the band!

Marcus is the voice of the lead singer in the Monster Rock Band - Skeleton Pumpkin Head.

Speaking of meeting our online friends in person, two of our regulars here on The Road, Dev from Raise Expectations and Sam's Top Secret Journal, and Sean, from Who’s The Slow Learner fame met and became friends! We spotted Sean being followed by a professional camera crew. Can’t wait to see what happens with that!

Dev agreed to be our first confirmed speaker for next year’s 321 eConference. She’s going to tell us what happens when she starts college and how she makes the transition from high school. We can’t wait!

Next to us in the exhibit hall there was a commotion. The ladies from IDSC know how to have fun!

I spent most of my time in the exhibit hall, but I did get to attend the Research & Medical Care Round table hosted by the Global Down Syndrome Foundation on Alzheimer’s Disease and Down Syndrome – What Parents and Caregivers Should Know.

There was a great deal of information presented including recommendations for more specialized adult Down syndrome clinics.

Hope

Besides all of the collaborating and friends meeting up, there were two events that filled me with hope. The first was the screening of "Ethan's Law - The Movie."

Every time I see a new iteration of the film I'm more impressed with Director Edward Rhodes' work. This version had parts of the interviews with two of the eye witnesses to Ethan's death. Patti and Rhodes answered questions after the screening and gave the attendees ideas about how to reach out to their own local law enforcement agencies.

I truly believe that when this film is ready to be presented to the general public it will not only educate viewers, it will empower them to become agents of change themselves.

Photo by The National Down Syndrome Congress

The biggest highlight in my opinion came after the opening plenary speech by supermodel Beverly Johnson.

This picture of Marcus and Global spokesperson Beverly Johnson is priceless. You may remember that Ms. Johnson is the only person to publicly discuss the drastic health disparities between Caucasians and people of color who have Down syndrome.

Throughout the conference, I used every chance I got to talk about the issue and raise awareness. This picture represents the hope for the future as we work to find out why these statistics exist and what we can do about changing them.

Thank You NDSC!

I'd like to publicly thank the NDSC for all their hard work. Organizing an event this size is not easy - but they make it look like it is. From speakers to volunteers, attendees to exhibitors, we all love the chance to get together and visit once a year.

Next year - Orlando, Florida!

And, if you attended the conference and would like to share your experience we'd love to hear from you!

Is There An ACTOR In The House? : Adults Who Have Down Syndrome Take The Stage

Mon, 25 May 2015 02:09:11 GMT

By: Stephanie Holland

One of the ways society is finding out more about Down syndrome is through television and film. While healthy debates within our community critique the message of stories and methods used to tell it, we can all agree that the performances are priceless! We'll be exploring how the arts allow adults with Down syndrome express their creativity and raise awareness as we prepare for the Ds Road Show in October!

Nothing Sheltered About It

The recent release of "Where Hope Grows" has sparked a discussion in certain spaces regarding what constitutes a positive representation of Down syndrome. The theory behind critical media studies uses a disability lens to measure the messages, imaging, and feelings evoked from a piece. There are bound to be ways to improve any message, but ultimately art is an expression of the artist. How it is interpreted is based on lots of different things, including the current social climate. Art is also a reflection of the beliefs and norms of the time.

The amazing work David DeSanctis did in Where Hope Grows should be appreciated. If nothing else, it's a great job if you can get it!

The reference to acting as work reminds me of listening to another of the Down syndrome community's top actors - the first to be seen and appreciated by a large, diverse audience - Chris Burke. I've heard him speak on several occasions and he was always adamant about how grateful he was to be a working actor.

Everyone knows Chris for Life Goes On, I'm sure there are many fans who still call him Corky, but did you know he also made a guest appearance on E.R. ?

Expect The Unexpected

Some of the story lines that include actors with Ds are to be expected. Glee has used two actresses to expose some of the everyday discrimination that goes on in our schools, and how those situations might be addressed. My favorite segment appeared in season one, when Robin Trocki was playing Coach Sue Sylvester's sister, Jean. [Episode 17, Bad Reputation]

The first time we see Jean in this episode, she's sitting at a table talking to her sister.

Sue: I never really understood how hard it is to be laughed at, particularly in slow motion. I try to make it seem like nothing can touch me, but boy. Jean I’m so sorry you ever felt that way. I’m sorry I didn’t protect you more.

Jean: Remember what we used to do Sue? Whenever I got sad we helped at the animal shelter to give back.

Sue: Because there’s always someone who’s got it worse than you do.

After Sue resolves her dilemma she returns to her sister:

Sue: After all these years, how is it that you still know so much more about everything than I do?

Jean: I’m the smart one!

Unfortunately, it's been reported that Robin was written out of the show because of advanced Alzheimer's disease after appearing in only four episodes.

Jamie Brewer's part as Adelaide on American Horror Story - Coven is anything but typical. Still, we see a familiar theme in Episode 4 - Halloween: Part 1 [(26 Oct. 2011) Director: David Semel Writer: James Wong].

Addie knows what she wants to be for Halloween: "Make me a pretty girl, like you Violet."

When her mother discovers the make-up on her face, she screams hysterically at her to take it off. Brewer makes a convincing emotional response.

Addie: I wanna be a pretty girl!...I don't wanna be Snoopy! I wanna be a pretty girl!

In this short clip from her Ted talk, [Escape from labels. Be free, be different: Sarah Gordy at TEDxYouth@Hackney] Sarah Gordy talks about the stereotypical "girl with an over protective mother" roles.

Yes, Sarah, there are other stories out there!

One of my all time favorite stories is this one starring Luke Zimmerman - Tom Bowman on ABC Family's The Secret Life of the American Teenager. He had a frequently recurring part, appearing in 90 episodes over 5 seasons. In this series of clips from Season 1, Episode 9 “Slice of Life” [Aug 26, 2008] Tom cooks up a little mischief.

There are several ways to look at this story line. Do you see stereotypes? Is the moral of the story too obvious? Did you laugh? Did it remind you of someone?

The Show Goes On

Lauren Potter is best known for her portrayal of Becky Jackson on Glee. Did you know that she, along with Luke Spinelli and Jared Kozak, worked on a three-part web series called Leader of the Pack ?

The new format may be just what the doctor ordered for awareness and creativity.

Short films are another promising venue for actors with disabilities. Festivals, like Sprout are becoming more popular. One short film that tackles pre-concieved notions is The Interviewer staring Gerard Odwyer.

[You can watch the whole 12 min film by Bus Stop Films here.]

The Interviewer challenges assumptions, even those sometimes made by parents of people with Down syndrome.

A rising star that we're keeping a close eye on is our friend Connor R, Long. His portrayal of Radek in the 1945 period piece Menschen (2013) is amazing. Watch him here in a promotion piece for his latest project, Learning to Drive.

You're already a famous super star in our eyes Connor! Keep up the great work!

Roll It!

These ten scenes help us get a better sense of what's out there so far. It's taken a long time to get here and we've only just begun. Getting accurate and equal representation in the media is never easy for any minority group. The actors, creators, and everyone involved in these projects are to be commended for taking a step.

I'll leave you with two final thoughts:

Did anyone notice the lack of diversity in the actors who are getting recognized?

While these artists are considered professionals, at the top of the Ds celebrity chain, those of us at The Road believe they represent the tip of the iceberg when it comes to talent in our community.If your loved one has caught the acting bug, please consider joining us for the Ds Road Show. The whole purpose of this three day virtual event is to showcase talent and celebrate creativity. You never know when the next star might be discovered! We're also looking for volunteers and sponsors to help us create a spectacular event to kick of National Down Syndrome Month in October. Email us to help support The Show.

That's a wrap!

How Do We Face The Scary Truth? Down Syndrome and Dementia: A Caregiving Issue That Needs Our Attention

Thu, 21 May 2015 18:20:25 GMT

By: Stephanie Holland

Parenting, of all kinds, requires hard work and determination. We all want the best for our children and try not to let what might go wrong keep us from living our best today.

Sometimes, we need to put our own discomfort aside. Alzheimer’s disease is affecting record numbers of families, and a disproportionate percentage of the Down syndrome community will continue to be affected. We have seen an increase in attention being paid to research for a cure. We also need increase our efforts to support families that are facing caregiving for loved ones with dementia and other medical conditions that typically occur in adults with Down syndrome.

Positive Parenting

In order to be good parents, we focus on ability rather than limitations. We set high expectations for our children, with or without designer genes.

We focus on the positive.

Every now and then, we also have to consider the not so positive. We buy insurance… just in case. We may not want to, but we consider things like writing a will, financial planning, and special needs trusts.

We teach our children to be as independent as possible.

Then, we hope for the best.

Stages

Life comes to us in stages, early childhood, school age, and adolescence are the topics of many parenting resources. We transition with our children, changing our focus to meet our current needs. We don’t concentrate on learning how to deal with dating issues when our child is learning to walk. Sure, we try to stay a step ahead, but some topics are just, as the tweens say, “TMI” (too much information).

Aging is a difficult topic. We don’t like to think about ourselves being negatively affected by father time, let alone our children. In the Down syndrome community, it’s the least talked about stage of life. We all know the main reason, our children are living longer now than ever before. There just isn't as much information out there. Pressure to stay positive about Down syndrome limits the spaces where we can have honest, open discussions about caring for our adult and aging children.

But think about that – our children are LIVING LONGER. Yes, there may be bumps in the road but it’s up to us to learn how to best support them, however uncomfortable it may be for us.

Truth: There are several medical issues identified as common among aging adults who have Down syndrome.

The "A" word

The most difficult for parents to think about may be Alzheimer’s disease. Our children have sometimes worked hard to gain skills and learn throughout their lives. We've worked hard to support them. This horrible disease can take all of that away. No wonder we don’t want to think about it being a possibility. We lean more towards denial than we like to admit. The problem with that is it can leave us ill-prepared.

Those of us with adult children have had to face many issues that needed systems change in addition to hard work within our family and community. We were told “No, your child can not attend school,” or “the only program we have in this area is located in our special school,” or even, “the best placement for your child is our special room, they’ve had great results from children like these.” We understands how it "it's always been done this way," works.

We can’t do it alone. Change takes time. We need to start now.

Learn From Others

A recent article published in The Irish Times tells one family’s story of Down syndrome and dementia. It starts with the heartbreaking fact that Bridget Connolly died at the age of 50. It goes on to give some sobering statistics for Ireland, and some sound advice for all who are involved in caregiving.

The College of Psychiatrists of Ireland recommends that every service for people with ID should have a plan for the recognition and management of dementia in people with ID, and that this population should undergo baseline screening and regular repeat assessments.

“…access very much depending on geography.”

Baseline screening and regular assessments for dementia are not typical in the U.S. either. Access to care and especially specialized care, is a huge problem here as well.

Unlike the general population, dementia in someone with an ID or Down syndrome can be more difficult to detect and the subtle changes in someone’s cognitive ability may go unnoticed until all of a sudden there is a dramatic decline in their condition, he says.

“Then you have a family who are suddenly being called on to care for someone with huge support needs.”

Did you know that a new Down syndrome-specific cognitive test battery has been developed? The Arizona Cognitive Test Battery (ACTB) is better suited for people with Down syndrome than the old cognitive tests. Researchers are hopeful that the tests will help pin-point changes in cognition that occur during the course of Alzheimer’s.

Have you thought about continuity of care?

“People with dementia who have Down syndrome should be supported to remain in the home of their choice with the family and friends that they know. Relationship-based care is absolutely key.

“We need to make greater efforts in ensuring those long-standing relationships are maintained,” she said.

We need to consider the current care options and talk about how to improve them. It’s something that will take planning on many levels; around kitchen tables, in board rooms and possibly even legislative offices.

There is work to be done. Families need help and support now. We can take some of the suggestions in this article (and others) to begin the conversations, or get motivated to find existing ones.

It’s not a happy topic, but it is real. Together, we can make positive changes and help today’s patients and tomorrow’s.

A Week of Milestones on the Road to #JusticeForEthan

Sat, 16 May 2015 04:52:35 GMT

By: Stephanie Holland

For two long years, Patti Saylor has advocated for change after the death of her precious Ethan. It has meant long hours, countless miles of travel and hours in meetings. The emotional toll of reliving that terrible evening over and over as she raises awareness and tries to ensure that something like this never happens again is unfathomable.

The Down syndrome and disability communities have been behind her, helping when and where we could, but for Patti and her family, this has been a very personal journey. There is good news however! This has been a week of breakthroughs worth celebrating! Today, I want to take a moment and update our community on some of the phenomenal progress that has been made, and celebrate Patti, the Saylor/Richmond families, and the thousands of people who have been touched in some way by #EthansLegacy.

The Definition of Strength

One of the things that amazes me about Patti is her way of caring for others while she deals with her own devastating pain. Many of us can attest to her unwavering friendship and her ability to deal with problems calmly as fast as they’re thrown at her. Patti is a problem solver. This week, as she stood behind Governor Hogan one can only imagine the sense of relief she must have felt. It may be cold comfort to her, but the fact that she has helped the rest of us so much is something she should be proud of.

Photo credit: Executive Office of the Governor, Photographer: Joe Andrucyk

The big news of the week is the signing of MD SB853 / Chapter 387 - "Ethan Saylor Alliance for Self-Advocates as Educators." This bill passed unanimously through both houses of the Maryland Legislature, and made it to the Governor’s desk in record time (one session). The support and empathy in the halls of Annapolis was palpable. When Patti spoke, people listened – and getting those in power is more than half the battle in most crusades for change!

Dedicated Advocacy Garners Results

This bill is the byproduct of hard work and dedication of countless others as well. Let’s take a look at some of the events that linked together to get us here:

Emma Saylor creates an online petition
Jon Perri and his team at Change.org help spread the word
Over 375,000 people join the fight for #JusticeForEthan
Saylor family & supporters deliver petitions to Governor O’Malley
Debra Alfarone (WUSA9) , Katie Kyros (WHAG), Theresa Vargas (Washington Post), and Danielle Gaines (Frederick News Post) become our champions in the media
Tim Shriver heads the Maryland Commission for Effective Community Inclusion of Individuals with Intellectual and Developmental Disabilities, formed by Gov. O’Malley in response to Ethan’s death
National Down syndrome groups recognize and honor Patti’s advocacy and assist her with her efforts

Patti shares her story in front of local, state, and federal lawmakers
Many people, (both witnesses to the event and those involved with reform in Ethan’s name) are interviewed by documentary director Edward Rhodes for “Ethan’s Law”

Law enforcement communities across the country recognize the need for additional training Justice Department - Maryland Unanimously Adopts Comprehensive Training Program for Police / Arapahoe County [Centennial, CO ] launches Down syndrome training

All Leading Up to a Very Big Week

These efforts reacheded a crescendo this week.

First, Governor Hogan signed SB853 creating the first of its kind effort to train people with intellectual and developmental disabilities to be active members of law enforcement training teams.

Yesterday, we got word that the Justice Department used the settlement agreement of an unrelated case to implement mandatory law enforcement training on interacting with persons with intellectual or developmental disabilities. Ethan’s story is the cautionary tale used in the training developed by Tennessee’s Department of Intellectual and Developmental Disabilities.

Finally, starting tomorrow, awareness comes to the big screen.

In theaters around the country, including the one where movie goers witnessed Ethan’s demise, patrons can see “Where Hope Grows,” a feature film starring David DeSanctis as Produce.

PRODUCE BTS - Casting David DeSanctis
Finding the right actor to play Produce was a challenge. There was so much good undiscovered talent out there, we found someone truly special in our star David DeSanctis.
Posted by Where Hope Grows on Saturday, October 25, 2014

David’s performance will help to educate society on the abilities of people who have Down syndrome.

Also, Edward Rhodes has finished filming on “Ethan’s Law,” and a special director’s cut preview will be shown at the Canadian Down Syndrome Conference this weekend. The preview is just the beginning of the process of bringing Ethan’s story to wider audience with this powerful film.

From Tragedy Comes Change

Though the road is one that no one involved would have chosen and we certainly wish we weren't forced to travel it, the journey has helped countless others. #EthansLegacy is about coming together for a bigger truth, creating long lasting, systemic change without violence, and the realities of Down syndrome.

Z - Alzheimer's Disease

Sun, 03 May 2015 03:07:43 GMT

By; Stephanie Holland

I could use a play on words and explain the reason this last post in our A to Z Blogging Challenge is late by saying something about forgetting to do it.

The truth is that it's a difficult subject to write, or even think, about. For those of us with adult children who have Down syndrome, the worry about Alzheimer's disease is always present.

Part of our series of infographics on aging and Down syndrome

The Research

Many people with Ds begin showing signs of Alzheimer’s as early as 40 years old. It is essential that adults with Ds not lose the ground they’ve worked so hard to gain. The results of our research will benefit the Alzheimer's community, even in individuals without Down syndrome.

LuMind Foundation is working hard to uncover the science behind the Alzheimer's / Down syndrome link. If you're interested in the research and what progress has been made, we suggest the session from Chief Scientific Officer, Michael M. Harpold, Ph.D.

Caregiving

In our community, the sad fact is that the research is likely to come too late to help our loved ones. Therefore, we need to talk about resources to help family caregivers.

We have started a collection of resources on one of our Pinterest boards.

Follow The Road We've Shared - Caring for an adult who has Down syndrome's board Down syndrome and Alzheimer's Disease on Pinterest.

One of the things you'll find there is a video: "Down Syndrome and Alzheimer Disease: What Caregivers Should Know Dr. Brian Chicoine."

We also publish news articles on our ScoopIt! board: Adults who have Down syndrome.

We're always on the lookout for new resources to add. If you find one that you think we should share, please let us know!

The Genius of Marian

Since we here on The Road believe in the power of narrative and story telling, we often suggest the documentary "The Genius of Marian" and their companion project "The Genius of Caring." The film tells one family's story, and the interactive website allows caregivers and patients connect and share their own stories. Check the website for a showing near you, or order your own copy on DVD.

Advocacy

There are any number of ways to get involved and advocate on this subject. We've already mentioned one - helping LuMind with their goals. Another would be to get connected with the Alzheimer's Association.

We recently found another interesting venture to raise awareness: Hilarity for Charity.

Hilarity for Charity ™ (HFC) is a movement led by comedian Seth Rogen to inspire change and raise awareness of Alzheimer’s disease among the millennial generation.

Seth Rogen is using his star power and voice with a unique goal: "creating the next generation of Alzheimer’s advocates."

How about a joint effort with Hilarity for Charity and Stand Up for Downs! ?

Not (Exactly) the End

While this is the final blog post in the A to Z Blogging Challenge, it's only the beginning of "All Together Now" as a theme on The Road. We look forward to finding more ways to collaborate with others who have similar goals.

I hope you've enjoyed the past month of blogs and found something useful for your family.

Let's end the way we started - with a song!

The Yin and Yang of Disability Services

Sat, 02 May 2015 00:21:35 GMT

By: Stephanie Holland

Usually the private and public sector operate on extremely different levels with different agendas. Private companies are guided by the bottom line (for profit) or their mission and board (non-profit). Government entities function within a larger bureaucracy, bound by rules and red tape.

We can debate which one is “better,” but the truth is, when it comes to providing the best care for our loved ones, we need all the help we can get.

In Chinese philosophy, yin and yang (also, yin-yang or yin yang) describes how apparently opposite or contrary forces are actually complementary, interconnected, and interdependent in the natural world, and how they give rise to each other as they interrelate to one another.

Wikipedia

Today we'll look at two different but complimentary entities: the Association of University Centers on Disabilities (AUCD) and Disability.gov.

When our children are young, we're involved in an entitlement program - the school system is charged with bringing services to us.

As our children age out of school, we're in charge of seeking out the best supports for our families. These two sources are great places to find answers and keep up on what's new in disability services.

The Association of University Centers on Disabilities (AUCD)

The Association of University Centers on Disabilities, located in Silver Spring, MD, is a national, nonprofit organization that promotes and supports the national network of interdisciplinary centers advancing policy and practice through research, education, leadership, and services for and with individuals with developmental and other disabilities, their families, and communities.

Each state has what is called a "University Center for Excellence in Developmental Disabilities (UCEDD)." These colleges have a plethora of resources and cover just about every aspect of developmental disability research and practice that you can think of. I highly recommend that you browse the website and locate the facility in your state. (*It will take you a while to see it all!) You might want to visit and follow the AUCD on Facebook too.

For the purpose of this blog we'll look at one initiative - Family Support

"AUCD advocates for policies that support family caregivers of individuals with developmental and other disabilities across the lifespan, including the Lifespan Respite Care Act, the National Family Caregiver Support Program, and Family Support funded under the Developmental Disabilities Act."

You may know that there is a Down syndrome caucus in Congress, but have you heard about the recently established Assisting Caregivers Today (ACT) caucus?

The contribution family caregivers make to our society has been valued at $450 billion annually in unpaid care

This group will educate Congress on the issues facing the growing numbers of family caregivers in our country and try to find ways to support them. The AUCD signed on to a letter thanking the legislators for their leadership on this issue and they are on the front lines of advocacy and research, forming a bridge between private and public agendas.

The Government Side

"...the U.S. federal government website for information on disability programs and services nationwide."

This federal government site gives links to information on services from homelessness to civil rights, to post secondary education. There are 10 different categories to browse, or you can search by keyword. To continue our example above, if you go to Disability.gov’s Guides to Information & Resources you'll find a link to the Family Caregivers Guide.

This is just a sample of what you can find there.

If you're looking for government services, you should also find your developmental disability services department of state government. They go by different names and are housed in different branches of government, but each state has one. Here are a few examples:

Maryland Department of Health and Mental Hygiene - Developmental Disabilities Administration (DDA)
Tennessee Department of Intellectual and Developmental Disabilities (DIDD)
South Dakota Department of Human Services Division of Developmental Disabilities
Vermont Division of Disability and Aging Services - Developmental Disability Services

Putting it "All Together Now"

As you can see, there are LOADS of information out there, the hard part is finding what's right for you and your family.

In the coming months, we'll be working on ways to help families navigate the waters of adult services. For now, we hope this information will help you get started with researching the yin and yang of it all.

X - Xenocide

Fri, 01 May 2015 15:40:42 GMT

By Mardra Sikora

Today we are using a word found in the urban dictionary, a term derived from fiction, however the threat is still real.

I confess, I have scrapped and re-written this blog about 10 times. It’s not easy stuff to write, to share, or to face. Which may surprise you to hear as I have written and written and written about this. No, it never gets easier.

All I can hear right now is the line from the movie Princess Bride, “No. Is too much. I sum up.”

Let’s start with the headline of the most recent article on the website, Down Syndrome Prenatal Testing, is“NIPS: 3 babies with Down syndrome born & 2,432 more selective abortions.” I’ll cut to the conclusion: “And researchers say it is cost-effective precisely because it will lead to thousands more selective abortions of children with Down syndrome (and even thousands more abortions of children without Down syndrome).”

But that’s not all, only a few weeks ago Princeton Professor Peter Singer, stated in an interview that it is “’reasonable’ for the government or private insurance companies to deny treatment to infants with disabilities.” If you want to know more about the statement and Singer, without losing all hope for humanity, read the NCD reply here, instead.

Less than a year ago, another bioethicist publicly claimed it is “immoral” to have a child with Down syndrome.

@InYourFaceNYer Abort it and try again. It would be immoral to bring it into the world if you have the choice.
— Richard Dawkins (@RichardDawkins) August 20, 2014

My reply was one of many.

These concepts are not new. They weren’t even new when Nazi Germany implemented them. This is Why The Movie Menschen is Not Just a Movie.

A few years ago, shortly after the Denmark headline boasted it will be ‘Downs Syndrome Free’ by 2030, I took a full 15 pages to explain, with medical and life documentation, my concerns via the “Essay Arguing Eugenics: A Case for Changing the World,” This came in the light of new prenatal testing that scares me not because of its existence, but because of its practice. One takeaway, among all of the study and medical facts, it is this: “No one can prenatally test potential.”

Recently these same tests have moved across the ocean to the UK. My heart broke all over again for the parents of people with Down syndrome who were reminded, again, of the “value” put onto their children’s lives.

Dear blogger-mum-advocate Hayley at DownsSideUp has written and spoken many eloquent and compelling arguments for inclusion, and rights, and compassion. She, and her family, reach out well beyond “the community” and talk to the public at large, government, and medical professional. Yet, of all of her words, I am drawn to share today one of the dearest posts she shared years ago, before all of this entered her schedule:“The Doctors' Waiting Room: The contribution our daughter makes.” Read this and know why I arrived at home in tears for her when the immensity of this battle hit upon her again like a stone that cannot be budged.

I reminded her. I reminded myself. Sometimes we keep fighting because it's right, even if we know cannot win.

For current information follow Mark Leach’s blog and twitter. To support the availability of up to date information about Down syndrome to new parents, check out Lettercase.org and the Down Syndrome Diagnosis Network.

To write about what this means for our children living today in a society that marginalizes and rates their lives…

Is too much.

W - Work that Needs Doing

Wed, 29 Apr 2015 21:43:31 GMT

By: Stephanie Holland

Those of us with adult children know that we, as a society, have come a long way in terms of advocacy and services for people with intellectual and developmental disabilities (ID/DD); but we also know that we still have a long way to go before our children are fully accepted and understood.

Today we’ll look at what kinds of projects are on the table right now, and where we might want to go next.

Our community has been celebrating a victory lately: the battle to get the federal ABLE bill passed took almost a decade. Parents and advocates from the Ds community fought in the trenches with people from many other disability groups. That kind of teamwork and dedication is necessary to accomplish the big tasks. The National Down Syndrome Society was among the leaders of that charge, and they have a well thought out plan for what comes next. During the 321 eConference, Ginny Sessions Siller, and Heather Sachs talked about the NDSS agenda for 2015. The NDSS National Policy Center is heavily involved in passing and tracking the progress of ABLE bills at the state level. Both the NDSS and the NDSC have a system where you can sign up for alerts when support is needed from the community.

It's Too Much!

I will confess. Sometimes it feels like there is too much to do and not enough hours in the day.

When I hear stories about families having a difficult IEP meeting, or struggling to get services I wonder if all the work we did in the early days of mainstreaming was for naught. When I hear comedians make fun of people who have Down syndrome, I wonder what it will take to get through to society that our children are not here to be a source of amusement. And, when I think about how Ethan died on the floor of that theater, calling for his mother, I worry about my own son and how many more people with ID/DD will be abused or killed because they are misunderstood and devalued.

But we can either become jaded and hide our heads, or we can acknowledge the fact that change comes at an incredibly slow pace and keep pluggin’ along.

First Things First

So where do we start? None of us can do it all, especially not alone. One way would be to make a list (we love lists!) and prioritize your family’s needs. Then do some research. Start with your local Down syndrome group and your local Arc. Find out what’s being done in your area so you can avoid duplicating efforts. If you don’t find anyone who is working on what you feel is important it may be time to branch out.

This month we’ve given you some information about what’s going on that we’re aware of:

NDSS – federal and state legislation
NDSAN – adoption
321 eLearning – community education
NDSC – national conference
IMDSA – awareness
Ruby’s Rainbow – post secondary ed
GDSF – research
IDSC – connections
NCCJD – justice
Special Olympics - health
Arc, DSAIA , and D.A.D.S. - local issues

These are just the tip of the iceberg. Many of the issues we’ve identified as being important to us may not appear, specifically, on this list but they could be connected; i.e. community education can be used to network and identify a plan of action, some of our issues require research and/or legislation, and the better we connect with each other and share the work, the more we can get done.

We invite everyone to join with us as we try to give a larger, organized voice to some of these issues.

There's a phrase we've borrowed from a friend that sums up how we have to look at the "work" of advocacy

Forward with Hope!

V- Village of Random Acts of Kindness

Tue, 28 Apr 2015 02:03:02 GMT

By Mardra Sikora

In some ways, we in the Down syndrome community are our own village.

This last March 21st organizations and individuals reached out to unknown friends and presented them with random acts of kindness. A lovely introduction to our village.

The idea for WDSD RAK was conceived and designed by the “big groups” then disseminated to individuals and local groups to do and facilitate however they wanted. That’s the beauty of what made this really work. Everyone could take a hold and do what felt right for them.

For example, the lovely Big Blueberry Eyes Family – they really made a day of it. Others gave quarters with signs at laundromats, or chick-filet, or Starbucks, and on. Josh and Joey had a lot of great input on Random Acts to share.

I L-O-V-E-D this idea from the start, after all, what is Down syndrome but a random act of kindness from the universe itself? Since I spent most of WDSD in the coffee shop participating with the 321eConference, I shared a little love there. And good news, it worked! Grown Ups & Downs received a lovely message via Facebook and the recipient gladly became a WDSD celebrator as well.

Marcus and Quinn took their RAK to the gym, where we partnered with The Bodysmith to provide Free The Marcus protein shakes (yes, he does have a shake named after him, peanut butter and jelly flavored).

TOMORROW we will celebrate World Down Syndrome Day by giving away our Marcus shake for FREE! A sandwich inspired...
Posted by the Bodysmith on Friday, March 20, 2015

These were fun ideas but I was most impressed with families who chose to reach out to the first responders in their community. Double Duty, well actually, triple duty this way. A little “training" in humanity for all, a little kindness and awareness, and a little #JusticeForEthan. Not a bad mix to help change the world.

This. Forward.
Posted by Justice For Ethan on Sunday, March 22, 2015

But, what about within our own village?

Some folks did their RAK to Ronald McDonald Houses and ER rooms, having young children and the memories of need for such places fresh in their minds. Stephanie, the founder of The Road We’ve Shared suggested we give to our own village, to adults in centers or homes, to people with Ds or other I/DD who are more alone than not, who would also love a pick-me-up and kind gesture.

I'd like to make a suggestion for #WDSD15 When organizing your random acts, how about thinking of our community members...
Posted by The Road We've Shared on Thursday, February 12, 2015

So what about it, Friends? We’ve started to investigate the needs and ways to reach adults in our own village who are in need of a little kindness. Let’s not wait for the next WDSD, What do you think? You in?