It Takes a Team

By Bernard A. Krooks, Past President, Special Needs Alliance

Dignity, security and personal fulfillment are essential to the quality of life that all individuals with intellectual and developmental disabilities deserve. But they face a tangled social, political and legal landscape, and it often requires the coordinated efforts of relatives, friends and special needs professionals to help them map their way.

Family members, of course, play a central role, offering emotional support and encouragement, planning for long-term financial security and frequently acting as primary caregivers. For some, they’re an individual’s most effective advocates, reinforcing their point of view with intimate understanding of a loved one’s needs.

Yet all too often, dreams face constraints.  Landmark legislation has recognized the civil rights of individuals with disabilities, and great strides have been made regarding social inclusion. But these hard-won victories are incomplete, and budget debates at all levels of government threaten even the programs already in place. Self-advocates, families and their supporters –advocacy organizations such as The Arc, the Consortium for Citizens with Disabilities, the Special Needs Alliance and many others–must continue their unstinting demand that people with disabilities have the same opportunities as others to lead self-directed, satisfying lives.

Then there are the special ed teachers, speech therapists, psychologists, career counselors and many other service providers who assist those with disabilities on a daily basis to realize their potential. These committed professionals challenge, guide and applaud those they serve in order to build the skills needed for self-reliance. They help provide a foundation for the aspirations of individuals and their families.

As a child with disabilities matures, families must often balance concern for their safety and well-being with a desire to encourage their independence. In most states, individuals are considered legal adults at 18, with full responsibility for their own financial, legal and healthcare choices. Special needs attorneys are sensitive to these deeply personal matters and can guide parents in their deliberations concerning various forms of guardianship, power of attorney and health care proxy, as necessary, and in ways to optimize self-direction.

Then there are financial considerations. The specialized care required by some individuals with developmental disabilities is costly. While many expenses are covered by public programs, there are gaps, and qualifying is usually means-based.  Families, financial advisors and special needs attorneys should begin partnering early to evaluate an individual’s long-term needs, eligibility for benefits, the amount of money necessary to make up the difference between what is covered and what is not, and how to protect those funds while receiving government assistance.

Self-advocates are increasingly shaping their own destinies. It takes a team to assist them with the tools to succeed.

The Special Needs Alliance (SNA), a national non-profit comprised of attorneys who assist individuals with special needs, their families and the professionals who serve them, has formed a strategic partnership with The Arc.  The relationship is intended to facilitate collaboration at the local, state and national level on issues such as providing educational resources to families, building public awareness, and advocating for legislative and regulatory change. 

On His Own Terms

Ricardo ThorntonRicardo Thornton always had big hopes and dreams. But as is too often the case with people with intellectual and developmental disabilities (I/DD), they seemed almost impossible to achieve. Fourteen years of Ricardo’s childhood was spent in the confines of Forest Haven in Laurel, Maryland. Forest Haven (closed in 1991) was the District of Columbia’s public institution for children and adults with a variety of mental, intellectual, and developmental disabilities that had a dark history of abuse of residents and below standard conditions. His sister and brother were also residents and, sadly, his sister died there, never experiencing a full life outside of the institution.

Ricardo was determined that his life would have a different outcome, but leaving the institution was just the beginning of his struggle. Ricardo took his first step by landing a job at the Martin Luther King Library, where he has worked for more than 35 years. Donna, a friend and fellow former resident of Forest Haven, got a job nearby at Walter Reed Medical Center. Donna soon got her own apartment and Ricardo’s weekly visits to her blossomed into romance.

For most, this would not be extraordinary, but at that time people with I/DD were rarely encouraged to live independently and certainly not to get married. Unlike The Arc, most developmental disabilities agencies, caregivers and even family members did not believe that people with I/DD could be employed, let alone live independently. Fewer still believed that they could have mature, intimate relationships.

Ricardo & Donna's weddingRicardo and Donna forged the way, but the journey wasn’t easy. While other couples only need to fill out basic information for a marriage license, Ricardo and Donna were told that it was illegal for people with I/DD to get married in D.C.! With support from The Arc of D.C. and other disability rights organizations, and through the couple’s own sheer determination, Ricardo and Donna eventually realized their dream of being together.

Life progressed, and like many newlyweds they wrestled with the question of parenthood, something their friends and medical personnel advised against. But, eventually they had a baby boy, who is now a successful 25-year-old with a wife and daughter of his own.

Now, Ricardo is one of The Arc’s most well-known self-advocates – living life on his own terms and inspiring others with I/DD. He shares his life story with audiences across the country, pointing out that making his hopes and dreams a reality required determination and the right amount of help, guidance and resources. His inspirational story has even been made into a movie called Profoundly Normal.

“I’ve seen people with severe disabilities who have grown and accomplished great things given the right support,” he testified before the U.S. Senate’s Committee on Health, Education, Labor, and Pensions (HELP).

The Arc is proud to have been able to help Ricardo achieve his goals for more than 30 years. The Arc supports individuals with I/DD in communities nationwide through a national network of chapters. In many cases, what people like Ricardo hope and dream for is what we often take for granted – from securing a job and getting married to having a child and living in the community of their choice on their own terms. We continue to advocate on behalf of the thousands of people with I/DD who are still living in state run institutions. With the tireless efforts of The Arc of Alabama, Alabama became the first state in the southeast to no longer operate large public institutions, and in December 2014, Illinois will have closed 4 out of the 5 of its state run institutions.

Your support allows The Arc to continue its important work.  You can help people like Ricardo and Donna live life on their own terms with your donation today.

Catching Up with Micah Feldman, Intern and Young Advocate

Micah FeldmanMicah Feldman is a young man “going places.”  Just to give you a sense of how involved Micah is with fulfilling his goals of being an independent young man, taking advantage of every opportunity in his path – it took us at The Arc several weeks to coordinate a time to talk to prepare this blog post. Between Micah’s commitments as an intern at the U.S. Department of Health and Human Services (HHS), speaking engagements at various conferences, and personal events (like his sister’s recent graduation weekend), Micah is not sitting still this summer!

Tell us about how you landed your internship at HHS this summer.

I heard about the AAPD internship program from my mom and thought it sounded like a good experience.  I applied once before, but wasn’t picked.  So I tried again and this summer I’m one of 30 or so people interning in Washington.  I wanted to work at HHS because I met Sharon Lewis at a conference and we became friends.

What is a typical day like at HHS?

Well, every day is different.   But I have spent time doing research on guardianship and voting rights.  I learn about the health care law.  I now know that getting a physical regularly is covered.  I’ve also supported the CRPD (U.N. Convention on the Rights of Persons with Disabilities).  It needs to get passed.

Why is the CRPD important to you?

It will help people travel more outside the country and have a voice at the table.  It’s important for us to support it.

Let’s talk about the good and the bad of your summer in Washington experience.

The best part was going to the ADA celebration at the White House. Tom Perez, the Secretary of Labor, spoke.  He’s done a lot for people with disabilities.  President Obama was not there because he’s a busy guy.

The worst part is by the end of the day, I’m tired of sitting in front of a computer screen.

What else have you been doing, besides working, here in Washington?

I went to a Nationals baseball game, which was a lot of fun.  I saw the FDR Memorial. And soon I’m going to the Newseum with AAPD.

What’s next for you?

I will go home to Michigan for a few days of rest.  Then I go back to Syracuse University, where I’m getting my certificate in disability studies.  I’m a teaching assistant too.  And I will continue to look for speaking opportunities.

This summer, I learned a lot and met lots of people.  Maybe in the future, I will work here.

We at The Arc wouldn’t be surprised to see Micah again in Washington, working full time or as a self-advocate for important issues like the CRPD.  Thanks for sharing your experience with us, Micah!

The Arc in Nevada’s Self-Advocacy Coordinator Honored for her Impact on Disability Movement

Santa Perez

Santa Perez accepts her award.

Yesterday, The Arc in Nevada’s Santa Perez was presented with The National Association of Councils on Developmental Disabilities’ (NACDD) Champions of Equal Opportunity (CEO) Award for 2013. Delaware Governor Jack Markell is NACDD’s other CEO Award recipient this year for his work as the Chair of the National Governors Association where he is promoting employment for people with disabilities nationwide.

Perez joined The Arc in Nevada as Self-Advocacy Coordinator in 2012.  In her role, she focuses on ensuring self-advocates, or people with disabilities who advocate on their own behalf for their rights, in Nevada have the information and access they need to become engaged in advocacy activities through The Arc in Nevada’s “Growing a Grassroots Movement” project.

Originally from Southern California, Perez earned her Bachelor of Arts degree in Psychology at California State University, Northridge. She owns her own home and lives with her son Noah and companion Timothy Brown in Las Vegas, Nevada.  A true champion of rights for Nevada’s citizens with intellectual and developmental disabilities (I/DD), she leads various trainings and workshops and serves as a client advocate. In addition to her position with The Arc in Nevada, Perez currently serves as the Statewide President of People First of Nevada.

“I am so honored to be receiving this award along with Governor Jack Markell. I don’t do what I do for recognition like this – I do it because I love to empower self-advocates. This award inspires me to work harder than ever to help others ensure that their voices are heard in Nevada and across the country,” said Perez.

The Arc in Nevada’s “Growing a Grassroots Advocacy Movement” program is funded by the Nevada Governor’s Council on Developmental Disabilities. Through this program, The Arc of the United States is working to develop long-term capacity for advocates to have input and impact on issues of importance to people with I/DD and their families.   This project started in 2011, and marks the first time The Arc has had a statewide presence in Nevada since the mid-nineties.

Highlighting the Talent of Self-Advocates in Evansville, Indiana

By Denise Seibert, Director of Development
Evansville Arc

Last month, Evansville Arc was proud to partner with The Arts Council of Southwestern Indiana to host our first ever art show in The Arts Council’s Bower-Suhrheinrich Foundation Gallery located in downtown Evansville, Indiana.  The show opened on May 10 and runs through June 12.  The show features fabric mosaics that have been completed by individuals served by our chapter, along with volunteers and staff of Evansville Arc.

The project began in 2009 as a one-time project to engage community volunteers with the clients served in our Adult Day Services program.  However, the project was such a success that we have continued work on the mosaics thanks to the help of local vendors, such as fabric stores and interior design professionals, who generously donate wall paper samples, fabric samples, scrap materials and other items.

I believe our President,  Deidra R. Conner, described the project best when she said “This project truly demonstrates that the love of art is universal and that everyone – regardless of physical or cognitive abilities – has talents or gifts that should be shared with others.”

Description of pieces

Freedom of Religion“Freedom of Religion.”

This mosaic represents the right for all people to practice their religion or beliefs. Seclusion of individuals with disabilities in the past and societal attitudes impeded their ability to express and practice their religion or beliefs. Many individuals with intellectual and/or developmental disabilities indicate that being able to participate in worship services of their choosing greatly enhances their lives.

Beverly attended church with her sister before her sister passed away. With supports, Beverly is now able to attend religious services. ““I’m happy to go to church.  I haven’t been since my sister died.  I really miss the music & want to sing.” – Beverly W.


Freedom of Expression“Freedom of Expression.”

This mosaic represents the right to speak openly and fully without fear of undue criticism or punishment. Too often, persons with disabilities have not been given the opportunity to speak for themselves. Due to social and cultural attitudes, their opinions were not always given the same value as those without disabilities and their efforts to speak up were stifled. Individuals with disabilities have much to say and are encouraged to speak up about issues that impact their lives and their community.

“I am able to speak my mind and follow what’s in my heart”- Matt B


Right to Access“Right to Access”

This mosaic represents the right of freedom of movement in the community. Freedom of movement is two-fold: being allowed to be a part of one’s community and being able to access it. In the past, persons with intellectual and/or developmental disabilities were encouraged to be placed in institutions and hidden from the rest of society. They were not able to attend public schools and take part in the daily activities such as employment, shopping, using recreational facilities, etc.  Prior to the Americans with Disabilities Act (ADA) even if they were allowed to participate, many individuals with disabilities were limited due to physical or other barriers. Today we are seeing more and more individuals with disabilities contributing to their communities as employees, volunteers and taxpayers as they are given opportunities and reasonable accommodations.

“The best thing about getting my job is that I’m earning my own money and I now have responsibilities. Having responsibilities is the important thing, like showing up for work and being on time.” – Nathan B.

‘I wanted to make a difference in the community’

William MonaghanBy William Monaghan, Guest Blogger

In celebration of Developmental Disabilities Awareness Month, The Arc is encouraging individuals with intellectual and developmental disabilities (I/DD) to “Empower Yourself, Empower Someone Else.”  Today, The Arc offers you an article from William Monaghan, the President of the Delaware chapter of People First and an individual with I/DD. Read on to find out more about William’s life and the steps he has taken to be his own best advocate.

This column first appeared in the Spring 2013 issue of Apostrophe Magazine to which Mr. Monaghan is a contributor. Apostrophe Magazine is a publication created for, about and by people with intellectual and developmental disabilities. You can subscribe to Apostrophe Magazine to read more interesting perspectives from people with I/DD as well as columns from The Arc’s national office covering a variety of issues.  And you can find out more information about how The Arc helps support people with I/DD who are interested in self-advocacy on our website.

I am the president of Delaware People First in Wilmington. I was born in Wilmington and have lived here most of my adult life. A good thing about Delaware is that it’s near big cities like Philadelphia, New York, Washington, D.C. and Baltimore.

My mother and father were wonderful role models and gave me the opportunity to expand my horizons by sending me to the Riverview School in Cape Cod, Mass., where I was taught many skills that I feel helped me in my success in my adult years. I graduated from Riverview in 1974 and then attended Brandywine High School and McKean High School in Wilmington.

My mother and father were instrumental in helping me to achieve my goals. My mother’s name is T.J., and my father’s name was William Monaghan Sr. My father is deceased. I also have a sister, Andrea, and they all live in South Carolina. My wife, Barb, and I visit them when we have vacation and on holidays, and we also talk to them on the telephone.

I work for the Dupont Co. in Wilmington and have been employed there for 35 years, which I am extremely proud of. The job has taught me many things, including how to communicate with people and how to manage my time. I work in the clerical/printing department, and I really love my job. I do a lot of different things in my job, which keeps it interesting and challenging.

I joined Delaware People First in 2003, and from the very beginning, I wanted to become an officer. I felt like I could do a good job being a leader and guiding the group. I also wanted to make a difference in the community and was interested in self-advocacy and self-determination. There are 40-50 members in Delaware People First, and we also have a group in downstate Delaware with about 10 members. We meet once a month and have discussions about issues that affect the group, and we bring in guest speakers to talk about issues such as employment, transportation, self advocacy, emergency preparedness (Gary Mears from the University of Delaware has been working with us) and many other topics. We also have gone on many trips to New York, Washington, D.C. and Baltimore, and trips to the Delaware beaches. Delaware People First has allowed me to make new friendships, to help other people with disabilities speak up for themselves and to become stronger advocates. It has also helped me with public speaking where I feel comfortable talking in front of groups and other people. Delaware People First treats people like adults as we should be treated. That is my favorite thing about the group.

The advisers for Delaware People First are Debbie A. Nock, who has been an adviser for 16 years (an “old-timer” in her words) and Susannah Eaton Ryan, who has been an adviser for seven months. The important issues we are working on now include emergency preparedness, self-advocacy and self-determination. We are also planning a statewide advocacy conference in March 2013. We are working with many other groups in Delaware to prepare for the conference and hope to have more than 100 people participate. Delaware People First has many fund-raisers each year. We raise money by having fashion shows, hotdog and bake sales, car washes, selling tickets for Friends Helping Friends Day at Boscov Department Store, gift wrapping at Christmas for family and friends and participating in restaurant fund-raisers such as Friendly’s, Chick fil-A and many others.

My favorite things to do are going out with friends, going out to dinner, taking trips, bowling, playing golf, Special Olympics and spending time with my beautiful wife, Barb. My favorite TV show is “Two and a Half Men,” and my favorite food is Salisbury steak and mashed potatoes (I also have a few others of course).

My best qualities are being outgoing, friendly, courteous, trustworthy, loyal, cheerful and dedicated to people and causes. As other people have stated, I am a Boy Scout.

Meet Teddy: Self-Advocate, Entrepreneur and Inspiration

By: Annette Downey, Director of Community Living Services of Oakland County in Ferndale, Michigan

Teddy Fitzmaurice is a 28 year old energetic entrepreneur with Down Syndrome who promotes human rights and disability advocacy.  Teddy lives in his own apartment and loves to play his music loud and watch TV whenever he wants. He enjoys taking care of his bunnies, Chloe and Amy, walking, running, biking, swimming, and hanging out with his many friends.

Teddy began his own business, Teddy’s Ts, in 2006. He sells T-shirts that come in many sizes, along with a multitude of buttons. Teddy has taken his business around the country including Washington DC, Chicago, New York, San Juan, St. Louis, and Columbus just to name a few of his stops. He also displays his shirts in several stores.

The logos displayed on Teddy’s t-shirts and buttons promote improved quality of life, social justice, and equality for all. Teddy promotes community living, self-determination, inclusive education, and people first language. His merchandise proudly displays messages such as “Label Jars, NOT People”, “Shred the word – R E T A R D E D” and “Disabled, Sexy, and Proud!”.  Teddy uses a variety of creative methods to share his vision and passion for advocacy.

Always the happy salesman, Teddy is eager to attend every conference he can to sell his shirts.  Teddy’s products are creative and inspirational, and they promote disability rights and social justice.  To check out his product line, please visit Teddy’s T’s website www.teddysts.com or register for The Arc’s 2012 National Convention & International Forum and purchase one of his t-shirts in Entrepreneur Alley!

Why I Got Involved with The Arc’s National Council of Self-Advocates

By Kevin Smith, one of the founding members of The Arc’s National Council of Self-Advocates

The Arc: For People with intellectual and developmental disabilities

I got involved in the self-advocacy movement because it promoted things that I believed in, both as a person with a disability and as just a person.  When I got involved in self-advocacy in the early 90s, people with disabilities were segregated from the rest of the community.  We were categorized as poor, pitiful, and helpless.

I wanted to join The Arc’s National Council of Self-Advocates because this movement has had a huge impact on my life and I want to share it with as many people as possible.  I hope this Council accomplishes two things: To tell people that they have the right to be included in their community and not be shut behind closed doors. The second would be that together, as a national group, the government will hear our needs and make a difference in someone’s life. I want to leave people with disabilities in better shape than when I started.

About The Arc’s National Council of Self-Advocates

The NCSA was developed to foster the active involvement of individuals with I/DD in the work of The Arc. Its primary purpose is to empower persons with I/DD to voice their opinions about what is important to them and to ensure that they are afforded the same opportunities as everyone else to have a meaningful life in the community. In joining the Council, members will be able to network with others who are involved in advocacy work, educate the public about the issues that are important to people with I/DD, and become active leaders in their communities.

The Arc Announces the National Council of Self Advocates

Washington, DC – Today, The Arc is officially launching the National Council of Self Advocates of The Arc (NCSA), and inviting individuals with intellectual and developmental disabilities (I/DD) across the country to join. The first national council of its kind, the NCSA will allow individuals with I/DD to join a network of leaders representing the full spectrum of ages and abilities across The Arc’s national chapter network. While promoting the active involvement of individuals with I/DD in the work of The Arc, this Council will give self-advocates the  chance to support each other and provide learning opportunities as they grow as advocates in their community.

“This Council allows self-advocates to share their unique perspective and truly make an impact in their communities. While we work nationally on behalf of people with I/DD and their families, nothing is quite as powerful as hearing directly from self-advocates about what is important to them. They can be our movement’s strongest messengers, and this council will harness that power,” said Peter V. Berns, Chief Executive Officer of The Arc.

The NCSA was developed to foster the active involvement of individuals with I/DD in the work of The Arc.  Its primary purpose is to empower persons with I/DD to voice their opinions about what is important to them and to ensure that they are afforded the same opportunities as everyone else to have a meaningful life in the community.  In joining the Council, members will be able to network with others who are involved in advocacy work, educate the public about the issues that are important to people with I/DD, and become active leaders in their communities. In addition, the Council will also be promoting leadership roles for individuals with I/DD in local chapters of The Arc and supporting The Arc’s commitment to employing individuals with I/DD.  Learn more about the focus areas of the Council and how to join.

The NCSA is being co-convened by Barbara Coppens, Joe Meadours, and Kurt Rutzen who are all members of The Arc’s National Board of Directors. They each have a deep personal interest in this Council and are looking forward to creating a strong network of self-advocates across the country.

“I am working to educate self-advocates like myself, siblings, and family members to be more involved in advocating for our rights,” said Barbara Coppens, who has a long history of fighting for people with I/DD in New Jersey.  She works tirelessly, educating legislators in New Jersey about why it is so important to remove the “r-word” from state statutes and writing articles on self-advocacy to inspire others like her to join in the movement.

“This is an opportunity for us to voice our opinions and show what self-advocates across the country care about,” Joe Meadours said. “If we don’t have the proper services we won’t have a quality life.”  Joe has been an advocate for many years and wants to use his story to encourage individuals with I/DD to be advocates for themselves and others. He has worked in five states supporting the self advocacy movement; most recently he served as Executive Director for People First of California.

“I believe that The Arc’s National Council of Self Advocates gives the opportunity for people with disabilities to really say what they feel and to get their voices out there in a way they haven’t before,” said Kurt Rutzen, who lives in Minneapolis, Minnesota and works for the University of Minnesota’s Institute on Community Integration. Kurt began his career by conducting interviews for Quality Assurance Region 10, an organization that creates and implements person-centered interviews that enhance the quality of life for persons with developmental disabilities in Minnesota. Through this job, he was introduced to The Arc of Southeast Minnesota.

Meet Sam Jenkins

Usually, you’ll find The Arc, the nation’s leading and largest organization for people with intellectual and developmental disabilities lending a helping hand. But in this case, it’s Sam Jenkins who lends a hand as a motivational speaker for The Arc’s New Jersey chapter leading people with disabilities like himself to become their own advocates. Watch Sam lead a group of eager self-advocates in discovering their inner strengths and speaking up for themselves.