Posted by: servicecoordination | September 30, 2014

Arc Maryland Announces New Executive Director

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The Arc Maryland announced the appointment of their new Executive Director, Cristine Boswell Marchand. Cristy has over 30 years’ experience in disability rights and public policy at the state and local levels on behalf of children and adults with

intellectual and developmental disabilities, with over 20 years managing The Arc Maryland until her move to New Mexico in 2011.

“The Arc Maryland is a catalyst to drive creative and positive change to impact the lives of children and adults with disabilities and their families. I deeply appreciate the honor and opportunity to be part of that change and look forward to partnering with stakeholders and partners,” said Marchand.

Cristy’s passion and commitment for inclusive lives for people with intellectual and developmental disabilities, family engagement in systems change, and self-advocacy leadership will be a wonderful benefit as she leads The Arc Maryland once again.

Most recently the Executive Director of Family Voices, a national organization dedicated to quality and family-centered heath care for children and youth with special health care needs and disabilities with 44 state affiliates and Family to Family
Health Information Centers in every state, Cristy will begin her duties on October 1, 2014.

For more information, visit: http://www.thearcmd.org.

From PRlog.org

Originally posted on THE INTERNET POST:

Something is very wrong here.

Shell Tzorfas on YouTube pointed us to this U.S. Centers for Disease Control and Prevention (CDC) paper “Trends in the Prevalence of Developmental Disabilities in U.S. Children, 1997–2008” and what are some pretty astonishing figures.

The joint CDC—Health Resources and Services Administration (HRSA) paper not only revealed that one in six children across America suffered from a developmental disability in 2006-2008, but the rate of parent-reported developmental disabilities in their children had increased 17.1% from 1997 to 2008.

Worse, in the 12-year period, the prevalence of autism increased nearly three hundred percent (289.5%).

Males were twice as likely to suffer from developmental disabilities as females. The sample size wasn’t small, either; the study included some 119,367 children.

One in six. That means if you go to just two of your neighbors’ homes with children, it is very likely that at one of them, you will…

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Originally posted on BEST BUDDIES BLOG:

  • NBA Star and Best Buddies Global Sports Ambassador Kyrie Irving hosts the Best Buddies Pep Rally and Basketball Game
  • Julie Remillard wins first ever “Best Buddies Jobs Employee of the Year Award”
  • Best Buddies Ambassador and Jobs Participant Jorge Morilla wins “Spirit of Courage Award”
  • Star of the new movie “Produce” David DeSanctis attends screening of his film at the Conference
  • More than 15,000 people tuned in to watch the Conference, live streamed

Bloomington, IN (July 30, 2014) – Over 2,000 student leaders, volunteers, and staff from Best Buddies International’s programs around the world participated in the 25th Annual Best Buddies International Leadership Conference: Journey to Innovation presented by C.A. Hartnell, July 25-28 at Indiana University in Bloomington, Indiana. The weekend offered attendees new ideas to share with their chapters’ back home, networking opportunities, and most importantly, lasting friendships.

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Originally posted on BEST BUDDIES BLOG:

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Bloomington, Ind(July 16, 2014)  Summer vacation will hold a special meaning for over 2,000 student leaders, volunteers, and staff from Best Buddies International’s programs around the world, who will participate in the 25th Annual Best Buddies Leadership Conference  presented by C.A. HartnellJuly 25-28 at Indiana University in Bloomington.

Best Buddies is a nonprofit organization dedicated to establishing a global volunteer movement that creates opportunities for one-to-one friendships, integrated employment and leadership development for people with intellectual and developmental disabilities (IDD).

This year’s conference will prepare the organization’s students leaders to be strong, passionate forerunners on the Journey to Innovation, challenging communities and inspiring the world one person at a time.

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Posted by: servicecoordination | May 29, 2014

Tackling TSC with Special Olympics

servicecoordination:

Editor’s Note: The following is a guest post blog from Sharon Lackey, the mother of a Special Olympics Athlete

Originally posted on The World of Special Olympics:

Editor’s Note: The following is a guest post blog from Sharon Lackey, the mother of a Special Olympics Athlete 

By Sharon Lackey

We found out that we were having a baby on our 9 year anniversary.  We were in disbelief because we didn’t think it would ever happen.  I had a normal pregnancy and Whitney was born a healthy baby girl.  Two months later our world was rocked to its core when Whitney began having seizures and was diagnosed with tuberous sclerosis complex (TSC).  We had never heard of this rare disease, and the outlook the doctors gave us at the time was that she would probably never walk or talk.

Imagine now, 17 years later, our intense excitement that Whitney will be competing at the 2014 Special Olympics USA Games representing Team Tennessee!

Whitney’s road to the USA Games has had its fair share of challenges, for both Whitney…

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Posted by: servicecoordination | May 16, 2014

A Story From Disability Blog

REBLOGGED from Disability Blog

http://usodep.blogs.govdelivery.com/2014/05/15/becoming-moms-advocate/

By Guest Blogger Stephanie Torreno, Author of Keeping My Balance: A Memoir of Disability and Determination

I never thought I would need to become an advocate for my mother. All of her life Mom fought for me, her younger daughter with cerebral palsy (CP). From learning to type with my thumb to receiving years and years of physical and speech therapy, I always knew my parents wanted the best for me to help me achieve my potential. When my father died after I graduated high school, Mom became my chief advocate and supporter.

Twenty years later, everything changed following my mother’s stroke. My continuing sense of responsibility to help Mom and to become more independent intensified as her sudden needs reversed our roles. I needed to take care of myself every way I knew how or could figure out. In addition, I had to assist Mom with tasks that she once accomplished easily, but now required my guidance and her intense concentration.

Mom’s weakening condition forced my sister and me to place her in a nursing home a year and a half after her stroke. I assumed the most difficult part of my new life would involve learning how to live independently with the assistance of caregivers. Living alone and making my own decisions soon became easier. My weekly visits with Mom, however, showed me I had the ongoing challenge of making sure she received good care.

As Mom’s abilities continued to decline, I learned to speak up for what she needed. Although I have never allowed my disability to hinder what I want to do, my CP placed me at a disadvantage in advocating for my mother. My inability to drive prevented me from visiting as often or unexpectedly as I would have liked. Nursing home staff failed to listen to my impaired speech, or dismissed my concerns if they bothered to take the time to understand me. Emails to administrators went unanswered or their replies explained policies and procedures that I didn’t see happening. If Mom’s care seemed inadequate when I visited her, I wondered about the quality of care during the many hours I wasn’t with her.

Several months ago, I attended my first care plan meeting in which only one staff member showed up. The woman came unprepared and discussed private concerns with the office door open and, afterward, in the middle of a busy hallway. At a requested second meeting, my sister and I voiced serious complaints and I became emotional describing the care, or the lack of it, I witnessed during my visits. Mom never had fresh water to drink when I arrived. Her face would often have food on it and her hair appeared uncombed. Hours passed before staff took her to the restroom. Pressing the call button for help meant waiting 10 or more minutes until one of the aides came to assist Mom.

One day, I found my panic-stricken mother left alone in the dining room with only a housekeeper cleaning up after lunch. The housekeeper didn’t seem to notice that an aide hadn’t come to take Mom back to her room. Most of these problems stemmed from the lack of staff scheduled to work on the weekends. I learned that additional staff  was called in to work after state inspectors made a surprise visit on Super Bowl Sunday.

A few days after the meeting, my sister told me the staff didn’t understand my speech and wanted to know how to better accommodate my needs. This lack of understanding seemed difficult to believe, since many residents have slurred or impaired speech. I felt that they didn’t want to hear or understand what I had to say.

Sitting in on the monthly Family Council Meetings gave me a sense of support and the realization that I wasn’t alone in my complaints. Daughters of other residents listened to my concerns and informed me of other quality of care issues that needed addressing.  After one of Mom’s falls, a few of the women told me that they checked on her whenever they visited their mothers.

As adults with disabilities age, more self-advocates like me will find themselves acting on behalf of elderly parents. Speaking up for others, especially loved ones, differs from promoting one’s personal rights and abilities. Advocating for an aging parent requires new knowledge and greater understanding of an individual’s changing needs. Like many sons and daughters with disabilities who live with their parents until they cannot, I feel I am the best advocate for my mother. Although disabilities may make this role reversal more challenging, who better to protect and comfort our parents than those to whom they gave so much?

Recently, my sister and I toured another long-term care facility and thought about moving Mom. While obtaining better care remains a priority, I know the unfamiliarity of a new facility may cause my mother to further decline in health, adding to her current anxiety. We made the decision not to move her, at least for now. I will not stop, however, seeking the quality of care she deserves. Her support in guiding me to become my own best advocate taught me to rely on my abilities and to always seek the best of possibilities.

Stephanie Torreno graduated from Houston Baptist University with a Bachelor of Arts degree in psychology and technical writing. Her work has included numerous online articles exploring education, special education, mental health topics, and supported employment issues. Ms. Torreno published her memoir, Keeping My Balance: A Memoir of Disability and Determinationlast year. Her website is stephanietorreno.com.

Posted by: servicecoordination | May 6, 2014

A Powerful Prescription

Originally posted on The World of Special Olympics:

Pill-organizer

By Darcie Mersereau
Vice President of Health Programs, Special Olympics International

As we age, there comes a point at which many of us introduce prescription organizer trays into our lives. Those trays, into which we count pill after pill, help us keep track of all the prescriptions our doctors give us to treat our myriad health problems. We are grateful for them, because there are many diseases that could kill us if not for these medicines. For many of us, however, using these trays brings a sense of defeat, an acknowledgement that our bodies have somehow failed us. Yet we follow our doctors’ orders, filling those trays week after week, because we want to stay healthy as long as possible and we want to live free of pain, distress, discomfort and limitation.

It is ironic, therefore, that so many of us avoid something that could lessen our reliance on drugs…

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Posted by: servicecoordination | April 30, 2014

It was a Walk in the Park

Originally posted on Raising 5 Kids With Disabilities and Remaining Sane Blog:

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Today was the first Saturday that we’ve had nice weather…about 65 degrees with a nice, light wind blowing. The sky is sunny with intermittent clouds so that the sun is not streaming directly down. The perfect day! The kind of day that kind of makes you want to clean. (KIND of…as much enthusiasm I can muster.) With the windows finally thrown open, nice, crisp wisps of air fill the house, cleansing it from the stale air that has remained all winter. Until this exchange of air happened, it had never occurred to me how stale I HAD been. Stuck in a rut. Rushing in the morning to work. Home from work tired. Dinner repetitive. Laundry never ending. No wonder my enthusiasm waned.
But today was a different story. Marie and I took the dog for a walk to the park. A walk with a lively step and an appreciation for…

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Posted by: servicecoordination | April 30, 2014

My Son is a Rock Star

Originally posted on The World of Special Olympics:

Editor’s Note: The following is a guest blog post from Astrid Moritz, the mother of a Special Olympics athlete. 

astrid a mother's storyI’m Astrid Moritz, Sebastian Palmeri’s mother and I feel like a rock star’s mother. My son is born a real winner and this has only happened since we joined Special Olympics. Before he was just the disabled son of a German woman – now he is the guy who wins a lot of medals. He is the one whose photo can be seen in newspapers. Now people are saying “I saw him on TV”…” Look, that’s Sebastian”… “I know him!”…

This is our story.

When Sebastian finished high school, during which we were assisted by psychologists, neuro-psychiatrists and public health carers, we found ourselves alone and isolated after graduation. As his parents we were now the only people responsible for Sebastian. I had to organize his life, he was a young…

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Originally posted on BEST BUDDIES BLOG:

Los Angeles, April 27, 2014 – Some of Hollywood’s biggest stars were in attendance at the Audi: Best BuddiesBowling for Buddies event at LuckyStrike Lanes at L.A. Live on April 27, which was presented by Audi.

This charity event, designed to raise awareness about Best Buddies International, a nonprofit that provides opportunities for friendship, employment and leadership development skills to individuals with intellectual and developmental disabilities (IDD), brought out a bevy of the organization’s notable supporters and participants, many of whom brought along their families.

Bowling for Buddies Committee Members Maureen McCormick, Nancy O’Dell and Lauren Potter joined Jamie Brewer, Adam Gaynor from Matchbox 20, Cheryl Hines, Nick and Joe Jonas, HollyRobinson Peete, Maria Shriver, Miss Universe 2012 Olivia Culpo and Miss USA 2010 Rima Fakih, as well as their families, for an afternoon of bowling and bonding with…

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