10 Things Parents of Children with Developmental Disabilities Should Know

Featured: 10 Things Parents of Children with Developmental Disabilities Should Know June 2015 Understanding Developmental Disabilities. Developmental disabilities are a group of conditions with a variety of causes that include language, behavioral, physical and mental impairments. About 15 percent of children aged 3 through 17 years old have one or more disabilities that began during the developmental period of a child’s life and will usually last through their lifetime. Developmental disabilities are divided into specific conditions, including: Autism spectrum disorders, cerebral palsy, epilepsy, Down syndrome and others. These types of disabilities may cause limitations in major life activities such as caring for oneself, learning or living independently. Kids with developmental disabilities experience delays in reaching milestones such as taking first steps, smiling and learning to speak, or show other signs. Children should be monitored by their parents and primary care providers for possible developmental disabilities. If you or your child’s doctor has concerns about the child’s growth, he or she should be screened for developmental disabilities at 9, 18 and 24 or 30 months old. Essential Early Interventions. While not all children meet each developmental milestone at the same pace, extreme delays in reaching these markers may be a sign of a developmental disability. Parents should learn the signs of childhood development so they can act early if they are concerned. Families on Medicaid can take advantage of the Early and Periodic Screening, Diagnosis, and Treatment program. Seeking services as soon as possible about possible developmental disabilities means your child will receive essential early interventions. Early interventions are intended for infants and toddlers who have a developmental delay or disability that is determined by evaluating the child. When the early intervention system receives a referral about a child with a suspected disability or delay, there are 45 days to complete critical steps. Learn how your state defines developmental delays so you can get the best possible treatment as soon as possible. Find your state’s early intervention contact to get the process started and familiarize yourself with key terms and language. Special Education and Related Services. Students with developmental disabilities may be eligible for special education and related services that provide Individualized Education Programs (IEPs). The Center for Parent Information and Resources breaks the IEP process down into 10 basic steps. A teacher, parent or doctor noting that a child struggles in the classroom will kick off the referral process for an IEP, during which the student is evaluated with parental consent. The update to the Individuals with Disabilities Education Act (IDEA) made parents a member of their child’s education team. Now, within 30 days of your child becoming eligible, you can partner with the school to develop an IEP that outlines goals and supports to help your child succeed. Assistive technology is often used in the classroom to benefit students of all ages with a developmental disability. For more information, Understood.org’s extensive section on school and learning has details on your child’s rights in the classroom, choosing or changing schools, tutoring and more. If you still have questions about special education read “Questions Often Asked by Parents about Special Education Services.”

Easing into Eugenics: Forecasts of a Diminshed Down Syndrome Population

by Stephanie Petroni from northernhoot.com:
In examining the evolution of society’s treatment of those who experience perceived disabilities- intellectual or physical, it would seem that progress has been significant. The last institution in Ontario that warehoused almost 2, 000 people with developmental disabilities was closed in 2009. Individuals were relocated to their original communities where most will live out the rest of their days in small group homes or in fewer cases, with family. The educational system and workplace are striving towards inclusive environments and there is an increase in government support for individuals so that people of all abilities may fully participate in all aspects of community.
However, various Down Syndrome organizations, as well as many self-advocates, have been sounding the alarm on the topic of pre-screening for the extra 21st chromosome during pregnancy.

Sprout Film Festival: Growing Awareness

by Ashley Miller from Boise Weekly:
Nicole Lang says she's isn't too picky about what kind of movies she sees, but she definitely has a type. Her favorite film is something she saw two years ago that you have probably never heard of.
"It was called Be My Brother," she told Boise Weekly. "We showed it the first or second year of the Sprout Film Festival. And we're screening it again this year. It's really touching. ... It's incredible."
Lang doesn't program film festivals for a living, not by a long shot. She's the program director of Boise-based nonprofit The Arc, which has provided therapy, care and training for thousands of individuals with disabilities since 1956. But for the past few weeks, much of Lang's energy has been focused on the Sprout Film Festival and movies--movies that she said will make just about any audience laugh a little, cry a little and most importantly, see the world differently.

Clarissa Serna Surprises Children On World Down Syndrome Day

by Caroline Flores from KRISTV.com NBC 6:
CORPUS CHRISTI - The kiddos with Special Needs at The Rise School got a special surprise on World Down Syndrome Day. Local singer and "The Voice" contestant Clarissa Serna stopped by to have some musical one-on-one time with the children.
The rise school is a school for toddlers and preschoolers who have developmental disabilities. The children attending the school have disabilities ranging from Autism to Down Syndrome.
On this special day the children sang, danced, and made some beautiful music with Serna.
Serna has worked with The Rise School in the past performing at fundraisers for them. She says these children and this school have a special place in her heart.
"I used to babysit a child with Down Syndrome and he was just so amazing. They're really, really smart very beautiful children," said Serna.
The Executive Director of the school says to have Serna singing with the children is special... Because no matter what the disability...music is the one thing they all connect to and love.
"To have this experience with the kids, we'll never forget it. It's going to be a memory we will always have," said Andrea Elizondo The Rise School Executive Director.

Parents with developmentally disabled children fight new regulations

by Anna Meiler from News Channel 2 WKTV Utica:

UTICA, N.Y. (WKTV) -- For many parents, their kids grow up, leave home and start their own lives. But, for parents with developmentally disabled children, their job never ends.

New regulations are forcing aging moms and dads to ask a painful question. Patricia Vilello wonders what will happen to her 38-year-old son with Down Syndrome if she isn't there to care for him.

"As a parent it causes a lot of sleepless nights," said Vilello.

Tommy used to be on a residential placement list through the ARC, but the state created a priority list six months ago that overrides it, which means Tommy could wait longer for a group home.

"The state does not want to open any more certified group homes. They're telling the parents to be creative, have your family and friends involved with taking care of them after we're gone. It's a 24/7 job. People aren't going to turn their lives upside down," said Villelo.

Cuts are also threatening structural workshops that Tommy attends three days a week at the ARC.

"It gives him a job, a place to go every day, mingle with peers, earn some money of his own. Everyone needs that to feel worthy," said Villelo.

Actors with Down syndrome in more films, TV; 'Glee' star Lauren Potter says 'we're just like anybody else'

by Hollie McKay from Fox News:
Hollywood is looking for more actors with Down syndrome to play pivotal roles featuring characters with the developmental disability, and actors and industry experts alike say the increase in their visibility is making a big difference both on screen and off.
At least two films being released over the next few weeks feature characters with Down syndrome in pivotal roles. Vanessa Paradis’ “Café de Flore” explores the unrequited love between a mother and her young son with Down Syndrome in the socially stigmatized 1960’s Paris, while Alan Cummings’s “Any Day Now” is inspired by the true story of a gay couple who took in a teenage boy with Down Syndrome abandoned by his drug-addicted mother.
On the small screen there’s “Glee,” which features Lauren Potter, an actress with Down syndrome; Luke Zimmerman, who stars in “The Secret Life of an American Teenager”; and Jamie Brewer who plays a key role in “American Horror Story.” Hit shows “Saving Grace,” “CSI,” “Life Goes On” and “Nip/Tuck” have also recently featured characters with the disability.
“We love to see all the actors with Down syndrome in the spotlight, so everyone can witness how people with Down syndrome succeed with support and are able to pursue their dream,” Julie Cevallos, rep for the National Down Syndrome Society, told FOX411’s Pop Tarts column. “We haven’t seen this since the break out of Chris Burke, our NDSS Goodwill Ambassador, who was the star of ‘Life Goes On’ in 1989. It helps reduce the outdated stereotypes by showing beautiful, talented, communicative actors.”

Therapist Dr. Nancy Irwin concurs that the recent boom in roles for those with Down syndrome help audiences understand the disability, and shows Hollywood is trying to more accurately reflect “real” society. 
“Entertainment should reflect all of us,” Irwin said. “Not just the ‘perfect’ people.”
For Lauren Potter, who has been on the FOX hit “Glee” for four seasons, her role represents more than just an acting job.
“It feels amazing to be a role model for people with and without disabilities. I get mail from people all over the world now from people who tell me that they didn’t really understand Down syndrome, but because of me they have read about it and studied it and now they know a lot more about it,” she said. “Lots of people with little kids or babies with Down syndrome tell me they aren’t afraid of the future for their child because of what I am doing to help people understand it better.”
Potter acknowledges that opportunities for actors with the disability have grown, but says Hollywood still has a long way to go.
“(It has shifted) but not enough! I love working on ‘Glee,’ and I hope that there are more and more parts for me and other actors with Down syndrome in television and in movies so I can keep working for a long, long time,” she said. “Actors with Down syndrome are just like any other actor, they want to follow their dream to act and have great roles; not just roles that are written for people with Down syndrome, but parts that are written for any man or woman. Parts that can be played by a good actor that just happens to also have Down syndrome.”
That’s where Gail Williamson comes in. For the past two decades as the founder of the non-profit Down syndrome in Arts & Media organization, she has been actively working with studios and agencies to cast actors with Down syndrome and other developmental disabilities. Some of the shows she has assisted with include “Glee,” “American Horror Story,” “CSI,” “ER, and “Scrubs.”

Williamson says babies born with Down syndrome are perhaps some of the youngest humans ever taught acting. “These children suddenly find themselves meeting a host of new adults (therapists) who will ‘direct’ them in reaching the milestones of babyhood,” she explained. “It’s happening, and there are more people with disabilities like Down syndrome in television and in films today.”
The increased presence of actors with Down syndrome also has a powerful impact on those who work with them. French actress Vanessa Paradis told us that her “Café de Flore” role gave her a deeper appreciation and understanding of those with developmental disabilities.
“He was so smart and charismatic, we had such a strong connection and there was so much intensity, generosity and grace,” she said of Marin Gerrier, the young actor with Down syndrome who played her son. “There is something so pure in the way he interacted with others. He is such a beautiful little boy, really quick and sharp.”
Adam Moore, SAG-AFTRA National Director of Equal Employment Opportunities & Diversity, also praised the recent changes in the industry.
"Seeing someone with a disability onscreen has an unparalleled impact on the way in which audiences engage with issues of disability in every part of their off-screen lives," he said. "For so long now, the lives and experiences depicted in entertainment have been a poor reflection of the actual world in which we live, but I believe that producers and audiences alike are now demanding more truthful representations that include people with disabilities."
Potter agrees.
“People see that even though I have Down syndrome, I am just like anybody else,” she said. “People used to look away because they thought I was different than they; but now people come right up to me and talk to me, they aren’t afraid of the differences. People can watch me and say, ‘wow, she is just like any typical girl.’”

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.

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.

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.

Down Syndrome Study Finds Families Are Happy

from Disability Scoop:

Having a child with Down syndrome may come as a surprise, but it’s a good experience, families are reporting in a trio of new surveys.

Researchers surveyed more than 3,000 family members and people with the chromosomal disorder across the country for what’s believed to be one of the largest looks at life with Down syndrome. The findings, which will be published in three articles in the October issue of the American Journal of Medical Genetics, offer a rosy picture.

The vast majority of parents said they have a more positive outlook on life because of their child with Down syndrome. And, nearly 90 percent of siblings indicated that they feel like they are better people because of their brother or sister with the developmental disability.

Nearly all of the survey respondents with Down syndrome said they were happy with their lives, themselves and their appearance. Only 4 percent said they felt sad about their life.

“As international discussion is mounting over the new prenatal tests, family members have now had their say about life with Down syndrome,” said Susan Levine from the disability nonprofit Family Resource Associates, who worked on the study alongside researchers at Children’s Hospital Boston and the Dana-Farber Cancer Institute. “And, more importantly, the people with Down syndrome themselves have clearly stated that they consider their lives valuable.”

Researchers did acknowledge that the survey population could be a slightly biased one since all respondents came from families that are members of nonprofit Down syndrome groups.

Nonetheless, they say the findings are valuable since they offer the “largest and most comprehensive portrait of life with Down syndrome to date.”

She makes the most of what she's got

from toledoblade.com:

Growing up with a younger brother who has Down syndrome inspired Dr. Eileen Quinn to become a developmental-behavioral pediatrician.

"He's just one of my favorite people, and I felt like I wanted to work with people with disabilities," Dr. Quinn said of her 48-year-old brother, Dan Quinn, who lives in the Detroit area. "It's important for them to get optimal medical care."

So Dr. Quinn was prepared when she and her husband, Dr. Peter Smythe, found out their fourth daughter was going to be born with Down syndrome. Sara's birth seven weeks early with a heart defect was unexpected, but otherwise Dr. Quinn was ready.

"I was the most perfect parent to have a child with Down syndrome, there's no question about it," said Dr. Quinn, a University of Toledo medical school faculty member who works at Mercy Children's Hospital.

Sara underwent heart surgery at 6 months, and now the 13-year-old is a student and athlete at Sylvania's Timberstone Junior High. Someday, Sara hopefully will work and live in the community with some assistance, her mother said.

Showcasing such abilities and raising awareness about Down syndrome is the focus of the 10th annual Buddy Walk held by the Down Syndrome Association of Greater Toledo, an annual event for Sara and her family. Nearly 1,000 people with Down syndrome, their families, friends, and other supporters are expected to take part in the Oct. 2 walk at UT's Rocket Hall.

"I think it's important to have our kids out in the community," Dr. Quinn said. "They're our little ambassadors."

Down syndrome is a chromosomal abnormality affecting more than 350,000 people nationwide. A small percentage have an inherited form of Down syndrome, but that is not the case with Sara, Dr. Quinn said.

Not only does Dr. Quinn help those born with Down syndrome, but she treats babies born with a wide range of birth defects and neurological problems. And, these days, many of the children she sees have autism or other developmental disabilities, the pediatrician said.

Both Dr. Quinn and her mother were near or older than 40 when Sara and her uncle were born, which increases the incidence of Down syndrome, Dr. Quinn said.

Unlike when her brother was born, however, children with Down syndrome are more accepted these days, and they have more medical benefits and opportunities, she said.

When Sara played soccer, the Sylvania Youth Soccer Association allowed her to be an extra player on the field, Dr. Quinn said. That is one example of how groups and schools have made alterations so Sara could participate in activities and classes, she said.

"I just love the little bit of creativity … to include her," Dr. Quinn said, adding that it also helps other children become more tolerant of those with disabilities.

Sara receives educational assistance but attends classes with non-disabled peers at Timberstone, where she is a member of the volleyball team, a sport favored by older sisters Kathryn, Colleen, and Bridget. Swimming is Sara's favorite sport, but she also does karate and is well-versed in volleyball.

"Bump, set, and hit," said Sara, a seventh-grader who pumped her fist every time she hit the ball over the net in a pregame warm-up recently as her parents watched.

Luckily, 11 girls tried out for the 12-member volleyball team, so Sara was able to clinch a spot, Dr. Quinn said. Sara just wanted to be involved and with her friends, said her mother, who wanted her youngest to have fun, get some exercise, and learn teamwork, just like her sisters.
"I'm not looking for playing time and for her to be the star," Dr. Quinn said. "She and I are perfectly OK if she cheers most of the time."

While her older daughters have received numerous accolades for both athletics and academics, Dr. Quinn said while watching Sara, "I'm just as proud of that girl over there. She makes the most of what she's got."

$30,000 grant to STAR, Inc., Lighting the Way

from Stamford Plus:

The United Way of Coastal Fairfield County has provided a $30,000 grant to STAR, Inc., Lighting the Way… Funds will go to STAR's Birth to Three Services offered at the STAR Rubino Family Center located in Norwalk. Rubino Family Center provides early intervention services designed for children with developmental and health related needs including autism, Down syndrome, significant prematurity and other developmental delays.

"The work we are doing here is so important for families in Mid-Fairfield County. Statistics show that over 35% of the children who receive early intervention services are able to reach their developmental milestones by age three and not require further services. We are so grateful to the United Way of Coastal Fairfield County for their support that helps us continue our work within the community," said Barbara Fitzpatrick, Director of STAR Rubino Family Center.

STAR, Inc., Lighting the Way is a not–for-profit organization serving infants, children and adults with developmental disabilities, as well as providing support services to their families. We create opportunities for individuals to live full lives with independence, freedom of choice and personal growth by providing support, services and advocacy. We inform and encourage the community to recognize and appreciate the value of all individuals. For additional information about the Rubino Family Center at STAR, Inc., Lighting the Way call Director Barbara Fitzpatrick at 203-855-0634 or visit STAR's website at http://www.starinc-lightingtheway.org/.

The United Way of Coastal Fairfield County advances the common good by creating opportunities for a better life for all. They focus on the building blocks for a good life: quality education that leads to a stable job, enough income to support a family through retirement, and good health. To accomplish this, they energize and inspire people to make a difference; reflect the diversity of the communities we serve; act as leader and trusted partner in crafting human care strategies within and across our communities; increase investments in these strategies by expanding and diversifying development efforts and supporting the efforts of others; measure, communicate about, and learn from these efforts.

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