Conquering the Hill

by Kendall Hatch from MetroWest Daily News:

If there were a list of the most dedicated people at the Massachusetts State House, chances are you'd find John Anton and Melissa Reilly on it.

Anton and Reilly, both adults with Down syndrome, are part-time aides in the offices of a pair of local legislators – Anton works in the office of state Rep. Tom Sannicandro, D-Ashland, and Reilly works for state Sen. Jamie Eldridge, D-Acton. During a joint interview this month in Boston, the pair was eager to talk about their work, both on and off Beacon Hill, and how they got involved in public service.

"I like the work that I'm doing," Anton, a 48-year-old Haverhill resident said. "I live and breathe work and I'm a workaholic when it comes to the work that I do."

Shepherd: Jack’s full and happy life

By Suzanne Shepherd from Statesman.com:

As a Board Member of the Down Syndrome Association of Central Texas and mother of a teenager with Down syndrome, I am often asked how medical science is progressing toward a cure. People are also curious about the latest early detection methods.
What these well-meaning people are essentially saying is, “since Down syndrome is a disease, we want to eliminate it, and that’s the most important goal, right?” The answer is “no, it’s more complicated than that.”
Down syndrome is a form of intellectual disability. It happens at the instant of conception, and there is no known medical technology – not even on the horizon – to prevent it. The only way to “prevent” Down syndrome is by testing fetuses for the condition and terminating those who carry it.
I realize that that might not sound so bad to some. One could argue that preventing the occurrence of Down syndrome reduces suffering in the world. When my son Jack was born, I cried in the hospital, and every day for the next six weeks. I thought that he would live a very limited and sad life, one of isolation and small potential. I thought that joy had left our family.
I was wrong. Jack, now a teenager, is a wise-cracking smart aleck who makes “your momma” jokes at the most inopportune times. He complains when we turn the radio away from his awful music and taunts my husband and I that he will be moving out the minute he turns 18. Raising him has been the most meaningful experience of my life.
Down syndrome today generally does not match outdated stereotypes of the disability. The average life expectancy is 55-60 years, the typical level of intellectual disability is moderate, and in scientific surveys, the great majority of people with Down syndrome say they are happy with their lives. Many hold jobs and have a wide range of interests and passions, from cheering on the Longhorns to singing karaoke.
This increase in community participation and quality of life would not have been possible without medical and educational research. The Down Syndrome Association of Central Texas supports and celebrate the advancements in technology that help people with Down syndrome with cognitive development, Alzheimer’s (which affects people with Down syndrome late in life), and other conditions common to those with an extra chromosome.
There are now six research centers across the U.S. working to develop these treatments. Global pharmaceutical company Roche launched the first-ever major clinical trial of one of these treatments in 2011, carrying with it the hopes of 400,000 Americans who have Down syndrome. These cognitive treatments, when they become reality, will not cure or prevent Down syndrome. But they will allow people with Down syndrome to make greater strides toward living independent lives.
Just last week, the National Institute of Health announced that it is establishing a patient registry, which will allow people with Down syndrome to enter facts about their health history into a database that will be accessible to researchers. The goal of the registry is to make it easier for people with Down syndrome to participate in clinical studies for new types of treatment.
Our association spends about 5 percent of our budget supporting such research. The other 95 percent goes to programs that focus on enriching the lives of people with Down syndrome by teaching them skills and providing social opportunities. My son Jack and others with Down syndrome face a community where their inclusion and acceptance are often more theory than reality, a community that still needs to be convinced of their intrinsic worth and their right to grow, learn, work, and live as full citizens.
The association is not alone in the way we choose to spend our resources — many charitable organizations have the same emphasis on inclusion and acceptance. United Cerebral Palsy focuses on better care and advocacy for people with disabilities, and Autism Speaks splits its focus between advocacy and research for causes and treatments.
Buddy Walk, our association’s main fundraising event, is minimally focused on “the cure.” It’s about bringing together our whole community to celebrate the part that people with Down syndrome play in it. At this year’s Buddy Walk, some of the participants with Down syndrome demonstrated martial arts skills, others were cheerleaders. They danced to live music, they pedaled in paddle boats across the pond, and they played carnival games. There was an abundance of joy.

the Arc & Inclusion International's 2012 National Convention and International Forum

Achieving Inclusion Across the Globe
Join The Arc and Inclusion International at the 2012 National Convention and International Forum to connect with members of the intellectual and developmental disability community from across the globe.

This four-day event offers informative and inspiring sessions from experts in the field, fun social events, networking opportunities and The Arc’s annual business meetings. This year we're partnering with Inclusion International, a global federation of family-based organizations advocating for the human rights of people with intellectual and developmental disabilities worldwide.

Our program will offer a international perspective on living and being included in the community starting with a pre-conference dedicated to leadership and self advocacy sessions, a variety of thought-provoking plenary and concurrent sessions, a film festival, closing dance event and more. Enjoy the event's international flavor at the Grand Hyatt in downtown Washington, D.C. and explore everything our vibrant capital city has to offer.

Date & Location
October 25-28, 2012
Grand Hyatt Washington
Washington, DC

What is the National Convention & International Forum?
This event is a multi-day gathering of the intellectual and developmental disability community consisting of informative sessions, fun social events, The Arc's annual business meetings, awards presentations and opportunities to network, engage with and learn from people with I/DD and their families, professionals and experts in the field and people connected to The Arc and its chapters. In 2012, the event will take on a global perspective with the presence of Inclusion International and guest from the international I/DD community.

Who usually attends?
This event is generally attended by individuals with intellectual and developmental disabilities, their families and caregivers, members of The Arc, staff and volunteers from The Arc and its chapters, professionals and experts in the field, supporters of The Arc's mission, and others connected to the I/DD community through their work, research or personal experiences.

What are the dates of the National Convention & International Forum?
The 2012 National Convention & International Forum will take place Thursday, October 25-28, 2012.

Where will the National Convention & International Forum take place?
The 2012 National Convention & International Forum will take place at The Grand Hyatt Washington, located at 1000 H Street NW, Washington, DC.

IPC reject DSISO's plea to be recognized

*****

from Down Syndrome International Swimming Organization:

Link to copy of the below letter from International Paralympic Committee to DSISO outlining why people with Down Syndrome are not allowed to officially compete in the Paralympic games.

28 April 2008 PV/IPC

Swimming for Individuals with Down Syndrome

Dear Geoff,

In reference to your email dated 15 February to Sabine Mikulas, and all previous communication on the interest of the Down Syndrome International Swimming Organisation (DSISO) to become a member of the Paralympic Movement, and after a further review of the facts you outlined, we have reached the following conclusions:

1. It is understood by both IPC and DSISO that not all persons with Down Syndrome (DS) meet the criteria for intellectual disability, but it is not all that common (e.g. translocation and mosacism). In the likelihood of occurrence, those particular athletes with DS (without associated intellectual disability) may fit under the current Functional Classification System of IPC Swimming on the condition they meet the requirements for locomotor disability in accordance with IPC Swimming rules and regulations (IPC Swimming Classification Manual, Section 1 – Swimming Classification). There is no need for those athletes to be recognized as a separate disability group within the IPC. The comparison made to athletes with visual impairment or cerebral palsy that happen to have an intellectual disability does not stand, as both impairments are qualified as physical impairments (which is not the case for Down Syndrome).
2. Trisomy 21, the most common form of DS, almost exclusively manifests itself with an associated intellectual disability. Within this perspective, according to the IPC Constitution Article 4.1.2, the IPC can only recognize one organization as the sole representative of a specific disability group. In the case of athletes with an intellectual disability the IPC Member is currently INAS-FID. Swimmers with an intellectual disability, including Down Syndrome swimmers with associated ID, have to meet the eligibility criteria of the respective International Federation (INAS-FID). On the basis of these conclusions, the proposal of DSISO to apply for IPC Membership is no longer considered by the IPC.

Kind regards,

Xavier Gonzalez

Chief Executive Officer

International Paralympic Committee

cc Tim Reddish, Chairperson IPC Swimming

     Sir Philip Craven, IPC President

Lauren Potter speaks at Best Buddies International Leadership Conference

Lauren Potter speaks at the 23rd Annual Best Buddies Internatio​nal Leadership Conference​: Inclusion Revolution​, about her experience with Best Buddies, how the organization has helped make her dreams a reality, and how it can help others with intellectual and developmental disabilities achieve their own dreams.

Buddy Ambassador Ziad Hozayen takes the stage at the 23rd Annual Best Buddies Internatio​nal Leadership Conference​: Inclusion Revolution​, and delivers a powerful speech about the need for social inclusion. Watch as he tells his personal story, and how Best Buddies has changed his life.

Fragile X, Down Syndrome Involve Similar Pathways

from PscyhCentral by Traci Pedersen:
Mental disabilities stemming from Fragile X and Down syndrome involve similar molecular pathways, according to a new study published in The EMBO Journal.
Both disorders are characterized by problems with the processes that regulate the way nerve cells develop dendritic spines—the small protrusions on the surface of nerve cells that are vital for communication in the brain.
“We have shown for the first time that some of the proteins altered in Fragile X and Down syndromes are common molecular triggers of intellectual disability in both disorders,” said Kyung-Tai Min, a professor at Indiana University and the Ulsan National Institute of Science and Technology in Korea.
“Specifically, two proteins interact with each other in a way that limits the formation of spines or protrusions on the surface of dendrites.”
“These outgrowths of the cell are essential for the formation of new contacts with other nerve cells and for the successful transmission of nerve signals. When the spines are impaired, information transfer is impeded and mental retardation takes hold,” he said.
Two of the most common genetic causes of intellectual disability are Fragile X and Down syndromes.
Fragile X syndrome is triggered by a single gene mutation that prevents the production of a protein needed for proper neural development (Fragile X mental retardation protein). For Down syndrome to occur, all or a part of a third copy of chromosome 21 must be present.
Although each syndrome is due to a separate genetic difference, the researchers identified a shared molecular pathway in mice that triggers intellectual disability in both disorders.
Down syndrome mice models have difficulties with memory and brain function, and the development of the heart is often compromised, symptoms that are also observed in humans with Down syndrome.
“We believe these experiments provide an important step forward in understanding the multiple roles of DSCR1 in neurons and in identifying a molecular interaction that is closely linked to intellectual disability for both syndromes,” said Min.

more from Science Daily:
http://www.sciencedaily.com/releases/2012/08/120803121010.htm

The Arc's New Medicaid Reference Desk

from The Arc:

Today, The Arc of The United States is announcing the launch of the new Medicaid Reference Desk. This resource is intended to help individuals with intellectual and developmental disabilities (I/DD) and their families as they navigate the complexities of Medicaid benefits, services and supports.

The Medicaid Reference Desk is an accessible, detailed, state-by-state information source about Medicaid benefits, which includes a glossary of terms, answers to frequently asked questions, person-centered planning resources and a blog from The Arc’s training specialist about issues related to Medicaid, self-advocacy and person-centered planning.

“This website helps individuals with intellectual and developmental disabilities and others access and gain knowledge about Medicaid, which is an essential lifeline for millions of individuals with intellectual and developmental disabilities and their families. As the largest organization defending the civil rights of people with intellectual and developmental disabilities, we are excited about the opportunities the Medicaid Reference Desk can provide to families across the country,” said Peter V. Berns, CEO of The Arc.

For people with disabilities and for those who provide their care, Medicaid serves as a valuable safety net. Often the only source of financial assistance for health care, Medicaid plays a critical role for people with disabilities in providing coverage and access to care. At least half of the funds for Medicaid programs come from the federal government with the remainder coming from state funds. Federal law contains detailed requirements and limitations on eligibility, services, and financing, but state laws vary.

This project was made possible by a grant from the U.S. Department of Health and Human Services, Administration on Developmental Disabilities (Grant No. 90 DN0215). You can explore the Medicaid Reference Desk on The Arc’s Website: www.thedesk.info.

The Arc advocates for and serves people with I/DD, including Down syndrome, autism, Fetal Alcohol Spectrum Disorders, cerebral palsy and other diagnoses. The Arc has a network of over 700 chapters across the country promoting and protecting the human rights of people with I/DD and actively supporting their full inclusion and participation in the community throughout their lifetimes and without regard to diagnosis.

submit your stories of integrated employment for people with disabilities

The summer months mark the movie industry's blockbuster season, when studios release what they think will be the biggest hits of the season.

Alliance for Full Participation is looking for its own kind of blockbuster to show on the big screen at our November 17-19, 2011 Summit:  Real Jobs--It's Everyone's Business.

The Alliance for Full Participation is seeking short videos (about two minutes long) that show and tell stories of integrated employment for people with intellectual and developmental disabilities. These can be success stories, job searches in progress, or stories about a job that didn't work out. We are looking for videos and stories from people with intellectual and developmental disabilities; employers; direct support providers; family members; and co-workers--in short, all those who have an employment story to share.

  

Click here for information on how to make and submit your video.

Hollywood's stars may glitter on the big screen, but AFP's stars shine where it's most important--in the campaign to double integrated employment for people with intellectual and developmental disabilities by the year 2015. 

Submit your video, and make plans now to see your story on the big screen at the Summit.

Here is what is planned for the 2011 event: 

• An unprecedented gathering of leaders committed to making full participation a reality for all people with developmental disabilities.
• A dynamic Town Hall that will present a challenging and frank look at what is needed to make full participation a reality for all.   
• One-on-one coaching sessions for self advocates on micro enterprise, asset development, and job skills.
• Over 130 leaders in the field serving as presenters, facilitators, moderators and coaches.
• Idea sharing, inspiration and information from 48 state teams working to double integrated employment in their communities.   
• A chance to join with the leadership of 15 national organizations, 48 state teams, self advocates, family members, employers, direct support workers, providers, policy makers, researchers, and state and federal leaders to create an action plan to double integrated employment for people with developmental disabilities by the year 2015 

Self-advocate pushing for change in law

from The Herald News:

When he’s not taking classes at MassBay, working at one of his three jobs or volunteering, Brian Heffernan is making sure that other young people with Down syndrome and other intellectual disabilities get the same opportunities he’s had.

Most recently, Heffernan, 20, of Newton, has been advocating for a bill at the State House that would change the special education licensing requirements to provide optional advanced training for teachers who want to focus on transitioning children with intellectual disabilities into the competitive work force.

Newton resident Julia Landau, senior project manager for the advocacy group Massachusetts Advocates for Children, said the bill would allow more children with intellectual disabilities like Down syndrome and autism to become productive members in their communities.

“Right now three-quarters of the youth with disabilities in our state ages 16-26 end up in sheltered workshops or [day habilitation] programs or unemployed and we know that youth with disabilities when provided the appropriate transition planning and services can measure up with their potential and can live and work competitively,” she said. “That’s the difference between the tapped and untapped potential.”

Heffernan has been taking classes in courses like criminology, mass media and career and life planning at MassBay for the past two years through the school’s partnership with the Newton Public Schools. The Inclusive Concurrent Enrollment grant program allows public high school students with severe intellectual disabilities who are between 18 and 22 and have not yet passed the MCAS test the opportunity to take inclusive college courses aligned with a career goal.

“I’m really proud of the career and life planning class,” Heffernan said. “It made me think a lot about my career.”

During the school year, Heffernan takes public transportation from his house in Newton to the Wellesley Hills MassBay campus, takes general college classes with his peers and works out after school in the school gym. Last summer, Heffernan was looking for activities to join on campus and noticed that the college didn’t have a glee club like his favorite TV show, “Glee,” so he researched and sought out the required number of signatures to form his own glee club.

Heffernan said his classes at MassBay have helped him decide that one day he wants to have a career in the film or television industry. He’s already written a 52-page TV script, “The Heffernan Show,” loosely based on “The Cosby Show.”

“One day I got on my computer and just started writing,” he said, while walking around MassBay last week.

In between his busy class schedule at MassBay and camp during the summer Heffernan finds time to work as a host at Wally’s World in Fenway Park, as a bagger at Shaw’s Supermarket in Auburndale and as a guest speaker in the “Understanding Our Differences” curriculum in the Newton Public Schools. He speaks to graduate students about his disability at Brandeis, Harvard and Boston universities and during the summer he volunteers at City Hall delivering mail and stacking books at the Newton Free Library.

“He’s really remarkable,” said Landau of the Massachusetts Advocates for Children, in a phone interview.

Heffernan’s mother, Julie Hefferman, said that her son wants to continue to take classes at the college after he passes his English MCAS test. She said that once he passes the English MCAS test he will place out of the special education program in the Newton Public Schools, but will still be able to receive special education services at the college.

“We’ve had a partnership for the past five years with the [Newton schools] to give students with intellectual disabilities the opportunity to take college courses,” said Jayme Finstein, inclusive concurrent enrollment grand coordinator at MassBay. “The goal is to have the courses connect with future career goals. You spend your whole day on campus doing anything that any other student would do.”

Julie Heffernan said her son has flourished through his classes and the new friends he has made at MassBay.

“On Facebook, he has all these friends we’ve never met because he has this whole college life now,” she said.

Landau said she is hopeful that the bill will soon be voted out of the Joint Committee on Education.