From Awareness to Respect
From Awareness to Respect

Categories: Community Life

 Photograph of Commissioner Sharon Lewis By Guest Blogger Commissioner Sharon Lewis, Administration on Developmental Disabilities, U.S. Department of Health and Human Services

The Developmental Disabilities Assistance and Bill of Rights Act considers the issues of “self-determination, independence, productivity, and integration and inclusion in all facets of community life” for individuals with developmental disabilities. All of these values presume respect for people with developmental disabilities. Where respect is lacking, self determination and independence are often denied. Integration and inclusion without respect become merely symbolic. As we celebrate Developmental Disabilities Awareness Month 2012, it is clear we have achieved much over the past 50 years, but we still have far to go before we can claim full success.

In recent conversations with young adults with intellectual and developmental disabilities (ID/DD), I have heard many incredible stories about their college experiences, their great jobs and their wonderful apartments and shared living arrangements – lives that don’t sound very different from those of other twenty-somethings. The young woman from Massachusetts who graduated and is now working as a teacher’s assistant at competitive wages. The guys from Wisconsin who just moved into apartments in an inclusive community where they host football parties for their neighbors on the weekends, and are excited to be able to invite girls over (without the watchful eyes of their mothers!). The young woman from Iowa who is supported by her family in her efforts to run her own coffee shop – a popular local gathering place and a connection to the community. And my friend from Oregon who has worked for an independent bookseller for more than a decade, hiring his own staff and purchasing his own vehicle, despite having no verbal language and other significant disabilities.

Yet for each of these positive stories, I hear dozens and dozens more from youth and young adults who have not yet been able to experience the lives they hope for – people who have experienced abuse at the hands of a provider or a family member; been physically restrained or secluded in our schools; who want a real job but cannot escape the sheltered workshop environment; who want to live on their own or with friends but are stuck in an institution, group home or with family; who have significant communication or behavioral barriers and do not have access to the support they need in order to express their choices, let alone their dreams.

For nearly every one of these young adults, whether they are enjoying good opportunities or experiencing substantial barriers, the path to and through adulthood is still often fraught with discrimination, low expectations, limited opportunities and lack of respect for people with ID/DD. Despite decades of civil rights protections, we still have more than 115,000 people with ID/DD living in large congregate institutions, while more than 120,000 people wait for home and community-based services. The graduation rate hovers around 35 percent, less than a quarter of people with ID/DD work in competitive integrated employment and people with ID/DD experience disproportionately high poverty rates.

At the same time, we have recently seen media stories and difficult debates about wrongful birth lawsuits, growth attenuation treatments (medical treatments that involve administering estrogen in order to reduce growth) for the convenience of caregivers, continued use of aversive therapies, bullying among our youth and use of harmful restraints in schools. Just last week, autistic adults held a candlelit vigil to remember the life of a young man with autism killed by his mother in a tragic murder/suicide, while some wondered whether it was understandable for a mother to commit such an act.

What do these stories and these statistics tell us about ourselves and our society’s assumptions about people with intellectual and developmental disabilities? How far are we from meaningful self-determination, independence, productivity, integration and inclusion?

At what point do we move from seeking simple awareness about intellectual and developmental disabilities to expecting meaningful respect for people with ID/DD?

Self advocates understand the difference. They are working tirelessly to eliminate the R-word, to expand home and community living options, to convince employers to give people with disabilities a fair chance at a fair wage, to empower youth with disabilities to speak for themselves, to help families understand why it is important to maintain high expectations…quite simply, to change our perceptions and fundamentally shift attitudes across this country about people with ID/DD.

Ensuring that we have a strong and vibrant self-advocacy movement across our country is a key priority for the Administration on Developmental Disabilities (ADD). ADD has been working with national self advocacy organizations (Self Advocates Becoming Empowered, Autistic Self Advocacy Network, National Youth Leadership Network), our network  (Developmental Disabilities Councils, Protection and Advocacy systems, University Centers for Excellence in Developmental Disabilities), and the National Association of State Directors of Developmental Disability Services to host a series of regional self-advocacy summits involving every state and territory. By bringing together state leadership teams, we hope to energize and guide our efforts to support the self-advocacy movement at both the state and national level, and ensure that the next generation of self-advocacy leaders has a solid foundation to build upon.

We all have a responsibility to ensure that people with intellectual and developmental disabilities receive not only our care, but our respect. It is time to move beyond awareness.

 Sharon Lewis was appointed Commissioner of the Administration on Developmental Disabilities in March 2010. Prior to her appointment as Commissioner, she served as the Senior Disability Policy Advisor to the U.S. House Committee on Education & Labor and as a Kennedy Public Policy Fellow for the U.S. Senate Subcommittee on Children & Families. She is the recipient of numerous awards, including the 2010 Distinguished Leadership in National Disability Policy Award and the Consortium for Citizens with Disabilities Chairman’s Award.

 Commissioner Lewis also worked for the Oregon Developmental Disabilities Coalition, the Oregon Family Action Coalition Team, founded DisabilityCompass.org and managed the Oregon Partners in Policymaking Program. She is a parent to three daughters, including one with a disability. She is also a native of Michigan and a graduate of Washington University in St. Louis.

26 Responses to From Awareness to Respect

  1. Jeanne M. W., PT says:

    Hope and Inspiration for a brighter future for all mankind!

    By playing, learning and working together we can all make a difference!

    Community Playgroups are a magical way to start the process. Playgroups which nurture blending families who have an infant/child with a special need with other families in their community support the notion that we are all one village. We are all normal and we are all different. We are more alike than we are different. If we play together, we can all learn together in school and we can all work together as adults.

  2. Michael K. D. says:

    Sharon,

    Came across your article when googling “disabilities respect”.

    I do think that helping others become more aware that regardless of a person’s disability is an important first step in fostering respect.

    Respect is from the heart, and to allow this to happen, people need to spend time with one another so that credibility can be built.

    I write a blog on disabilities, that your readers might be interested in as I attempt to level the playing field between pepole with disabilities and others.

    Thank you for your article.

    Michael

  3. SF-PUC says:

    I feel that people have respect for their fellow-man regardless of a disability or not. Unfortunately, society has placed value on negativity. Even Commissioner Lewis writes 3 paragraphs of the negative experiences faced by individuals with disabilities to 1 paragraph describing the positives.

    To be respectful is to be nonjudgmental. The posted remark that individuals with disabilities “want to live on their own or with friends but are stuck in an institution, group home or with family” may give the impression that family members do not care or do not want to be bothered/burdened by the individual with a disability. This is farthest from the truth. Commissioner Lewis states, “we still have more than 115,000 people with ID/DD living in large congregate institutions.” As heart-wrenching as this sound, there are family situations were this is the optimal choice for the care and quality of life of the individual with a disability. But these families are frowned upon and told that their own interests were considered over that of the individual with a disability.

  4. James R. M. says:

    Dear Friends, I’ll tell you what community life means to me. I have the choice to do things I like to do. Like if I’m off from work during a weekday, I could enjoy it because I could enjoy my day off – could sleep in and also catch up, wash my clothes. If was in a group-home during my day off, I would be going to a workshop or day hab. Then I could not catch up on some sleep or wash my own clothes. Even if I want to rent a movie, watch it at my own place. Community life is also doing the sports I like to do, like me, my slot cars, even play on the softball team in my church. It welcomes not just people with disabilities, it is for everyone. I played 9 seasons of softball, made great plays, like to catch the ball, not easy pop ups. Since renewing myself, I’m racing my slot cars again. Without my real job, I would never have 6 slot cars and hand slot cars control, also need tires, other basic things for my cars. That costs money, some parts 25.00 dollars or if I need to buy a motor to replace the old motor, even buy a new motor. Even save some money to buy new slot cars is about money. If my choice is to stay at home on Saturday night, I will be home watching tv. Since 1992, I’ve been on my own. The only sad thing is my father and step-mother could not see good things about community living. In 2003, my step-mom past away, no one told me she past away. I did not say goodbye to her. My father still has a closed mind. He did not get money and no support. The job I have in my community is my only income. That means to me. If you want to hear more thoughts, reply here. Sincerely, James R. M. P.S. I’m going to wash my clothes now.

  5. Susan R. says:

    I am grateful for Commissioner Lewis’ insight and focused hard work on behalf of persons with ID/DD. I am also a parent and we provide 24/7 care and assistance for our adult son.

    When you look at populations that have required federal and state laws to ensure their civil rights, you will find that respect is not the only issue of vital importance and concern. It also breaks down to the issue of how those individuals are valued. The value that we place on individuals is directly related to the number and nature of the struggles those individuals have had and continue to face in achieving their full civil rights. That has been and continues to be the case for many individuals throughout the history of this country.

    When we value individuals, we think and talk about them in positive terms. We value them for what they have done, the benefit that they bring to others, and our relationship with them. So often I hear individuals with ID/DD spoken of in terms of what they can’t do or who they are not. How does that convey their value?

    In terms of choice for living environments–there are only a few groups that come to mind who have little or not choice in their daily routine and living arrangements. College students in dormitories, military personnel, and prisoners may not have as much choice and control about their living arrangements and daily schedules as they would like–but they all made the choice that brought them into those environments. When individuals with ID/DD are housed in institutional settings, because of someone else’s choice and not their own, is it because they can only get the level of care they require in that setting–or is it because we who are their advocates have not done enough to help convey their value?

    Just because there aren’t better living and housing options for individuals with more severe ID/DD currently available, doesn’t mean that better models cannot be created. Certainly dollars are a factor–but so is resolve. When individuals with ID/DD have more respect and value as individuals they will have more opportunities for self-determination and independence in their everyday lives. You may say that I’m a dreamer–but I’m not the only one.

  6. Stephanie S. says:

    To all those parents/families who have made the choice for group home or institutional care, I feel your pain. I also see the value in having a progressive-thinker like Commissioner Lewis. My beautiful 24 year old daughter is legally blind, has Rett Syndrome, and is dependent for all care, fed through a J-tube around the clock and requires periodic oxygen suction, and bowel assist. These are just some of her needs. She lived in a nursing home for 8 of her precious childhood years as there we not sufficient in-home famiy supports to keep her at home. But through diligent advocacy – the type that Commissioner Lewis is talking about- our family has been able to muddle through the maze of services and have had her at home for the past 13 years. It is certainly not easy, and as I feel tired and at my limit, I imagine what it’s like for her, and what type of hell it might be for her without family oversight of her care. We are very lucky. Many of you may not have the same resources, your state may not support your cause, or your case manager may not be forthcoming with what is available. There are as many reasons for placement as there are people placed, but one thing I’ve learned is that nobody can judge your decisions unless they’ve walked the path along with you. Please don’t condem Commissioner Lewis for her perspective either. What we cannot afford is to be working AGAINST each other. Wouldn’t it be nice if there wasn’t a lack if professionals to serve people in home situations of their choice or their family’s choice? What if the affected families helped develop the policies to support REAL choice, not just the choices offered, funded, or currently available? The vision for my daughter is that she live in a home, apartment or other separate quarters within a stone’s throw of our home, and that we get to choose the caregivers, train and oversee them, but not be on-call 24/7 like we are now. Just because that option does not exist does not mean I stop there. And the respect issue…we change the world one person at a time. Please respect each other here on this blog, respect those of us working hard to make sure you get to retain choice, and respect yourself for the decisions you’ve had to make. Peace.

  7. A. says:

    I am deeply saddened by many of the comments here.

    On this journey toward full rights for individuals with disabilities, it is frustrating and confusing when fellow parents are there to set up roadblocks.

    What Commissioner Lewis is asking us – all of us – to do is, indeed, a tall order. It is daunting. It requires that we turn deep inside ourselves to face long-held stereotypes and beliefs, that we turn to our loved ones and ask the same, and then turn to the outside world and ask them to fully accept our children for what they CAN do, instead of seeing all the can’ts.

    It is scary to look at our children, whom we have cared about and worried over for years, and make the world more open to them. After years of deciding for, it is hard to transition to deciding WITH our children.

    But it must be done. People with disabilities deserve the same rights to self-determination that those without disabilities enjoy.

    Commissioner Lewis is asking us to open our hearts and minds to the needs and wishes of individuals with disabilities. She advocates for a world where a workshop or an institution isn’t the only option available. She advocates for us to hear our children say “I want meaningful work for meaningful pay”…and to help make that a reality without imposing limitations, doubts, and fears.

    I, for one, see nothing wrong with that.

  8. Kevin F. says:

    I have had the pleasure of meeting Commissioner Lewis a couple of times and heard her speak on another occasion. I respect what she is doing for individuals with ID/DD.

    I have visited the facilities that some are talking about, but I did not see any residents at the time of my visit. I am friends with others who spent time in these settings, even visiting a facility with a former resident. They are glad that they no longer reside in the facility. I have heard the passionate stories of family members, who believe that the facility is the best setting for their loved one, but I guess the way some spoke, I got the impression that they do not know any other option. How many families are in this category, of not knowing their options?

    Being a father of a young teenage man with DD, I have included him in many of the decisions that affect HIS life, more so in the last 5 or 6 years. He has a say so in how he lives his life. He has a say so in what he wants to work on at school. I don’t think that I make many decisions for him without his input. He is given choices.

    When my son was born, the doctor told my wife that we should not have any expectations for our son. Imagine, your first child and the doctor tells you not to have any expectations.

    My son is non-verbal, yet he makes his voice heard. He helps put together story boards and power point presentations to tell his story, tells what he wants to those that may not be able to communicate with him the way that I can, because I spend every day with him.

    I am excited to work with my son when we are out advocating together. I am amazed each and every time at what he has accomplished. I learn more from individuals with ID/DD every single day. They teach my son how to live an independent life. They lead by example.

    I am thankful for the opportunities that are afforded my son because of the Developmental Disabilities Assistance and Bill of Rights Act.

  9. Beth says:

    Commissioner Lewis’ call for respect and opportunity for ALL people with disabilities is critical in creating a society that knows and values all people because the entire community has had chances to get to know and build relationships with people with disabilities. None of us really knows any individual’s potential until that person has had opportunities to participate and make choices. We are so fortunate to have a visionary leading our Administration on Developmental Disabilities who isn’t afraid to say the status quo isn’t good enough and that all people have the right to a life with dignity, relationships, opportunities, and choice.

    • Suwanna says:

      It is so true! We are COUNTING on you! I know I want my child to grow up in a state that knows how to compromise and work with others and how to invest in the future of ALL of our citizens, not just the most affluent who can further careers and political aspirations. I know I want my child to grow up in a state that values real people – ALL people – which includes diverse populations. A state made up of unique individuals who can count on their local government to look out for their best interests. Is Minnesota that state? Can you not compromise and make a decision and finish the job you started so as not to punish those who are depending daily on these very necessary services? Isn’t that the kind of state you want to live in? Isn’t that the kind of world you want to live in?

  10. Virginia L. C. RN BSN PHN CDDN says:

    The Developmental Disabilities Assistance and Bill of Rights Act considers the issues of “self-determination, independence, productivity, and integration and inclusion in all facets of community life” for individuals with developmental disabilities.

    And also states that families are the primary decision makers under Federal Medicaid Rules –Too often those with profound disabilites are put into the same category as those who can function in a general community setting. But for those who need constant licensed care, the community is not prepared to serve this population, so for those like my grandson, a Developmental Center is the only life he will ever know–though he does not know where he is. Our grand daughter is happily living in a group home as her condition warrants such placement and as our choice—-Families are the Primary Decision Makers.

    Sharon Lewis recent visit to Wisconsin’s Center where she personally met with many as described above did not influence her to recognize that many cannot be served in the community due to lack of licensed staffing and resources as the norm in Group Homes, or availability of staffing to come to a home.

    Virgnia L. C. RN BSN PHN CDDN.

  11. Mary P. says:

    Talk all you want to about “awareness” and “civil rights,” but by not allowing placement in what you consider an “institution” for my son you are denying his civil rights. There is a minority of people with disabilities who need a controlled and safe environment and my son has that in a campus setting at a congregate care facility. Yes, we have tried many other alternatives and he has suffered serious injuries. Just read the definition of “self-determination” in the dictionary and you will see that it is a subjective determination for someone who is non-verbal and not culpable. There is not a “one size fits all” situation.

  12. Becca says:

    If anyone has arrived at the conclusion, based on Commissioner Lewis’ comments, that the 115,000 individuals with ID/DD living in congregate settings are there due to discrimination, low expectations, limited opportunities and lack of respect for people with ID/DD, or that civil rights protections have not been adequate, please consider my son.

    Commissioner Lewis had a brief opportunity to meet our son in his “large congregate institution”. She had previously criticized our family’s placement decision for our son without ever meeting him or having any knowledge of his residential setting, other than it was a Medicaid certified ICF/ID. We invited her to visit. I had hoped that she left that morning understanding that our decision for a highly specialized medical setting for our son was based purely on what was and continues to be best for him — 24/7 intensive skilled nursing care which exceeded our family’s ability to provide at the level required. It definitely had nothing to do with discrimination or lack of respect.

    Unfortunately, my hopes have been dashed now that Commissioner Lewis bemoans the fact that “despite decades of civil rights protections” there are still thousands of individuals with ID/DD in facility based care.

    The reality of my son is that despite his 32 chronological years, his functional abilities are in the 4 – 12 week infant range. His “personal independence” does not involve having an apartment to host football parties or inviting girls over. His “personal independence” might simply be a day when his extreme spasticity allows him to hold his head in midline while positioned in his chair or a day when his copious secretions do not cause him to aspirate.

    Commissioner Lewis is either unable or unwilling to accept my son, and others similarly situated, as individuals with ID/DD that have far more intensive needs than others and ARE BEST served in a highly specialized institution. As the head of a federal agency that receives public funds to advocate for ALL individuals with ID/DD, there is no place for personal biases from Commissioner Lewis.

  13. Jacqueline R. says:

    Nice hearing such beautiful comments. I have a disability because I had a car accident in 2002. Before the accident, I was studying nursing at Delaware Tech. Because of this situation, I could not continue my nursing studies. However, I looked to have a different career in the human services field. I got a degree in A&DC at the same school. I also got a bachelor degree in Behavioral Sciences at Wilmington University in 2011. In spite of all my degrees, it has been hard to get a job in the field. It seems that disabled people need to have someone working at social services to recommend them in order to get a job because I had so many interviews, but they did not tell me the exact reasons why they disqualified me for such positions. Only a couple of a letter I got from them telling me that they got other candidates better qualified than me. My question is how I can get job experience if they do not give the opportunity? I am bilingual. Spanish/English.

  14. Lisa L. says:

    First a “Hello” from Oregon where Commissioner Lewis has done such great work in the past. I am the mother of an amazing 21 year old daughter who is profoundly hard-of-hearing. In the disability community, she is one of the lucky ones whose limitations are not as severe as some other student’s. However, now that she has struggled to make her way through college and is attempting to find meaningful work, she is encountering some real discrimination and is frustrated with the limited opportunities in this already tight employment/economic climate. She is most recently attempting to obtain a summer internship which is required for her degree. She applied and interviewed through the Workforce Recruitment Program in the fall and has diligently applied for other opportunities as well, through both the federal government and nonprofits based in Washington, D.C. My question for the Administration on Developmental Disabilities staff is whether they hire interns through the WRP? It would seem ironic if they did not, but so far none of the organizations that serve the disability community have made contact with our daughter while the WRP interviewer told her that she was one of the most qualified candidtates he had spoken with around the country. The Federal website claims that of the 2,000 WRP applicants last year, 500 were hired, but there is no way to contact anyone to find out what is happening this year. As we are at a point in the spring term where it is too late to obtain a security clearance for summer work, we are assuming she is out of luck but just wanted to challenge your office and see if you have hired from this pool of available and able applicants.

    • Disability.Blog Team says:

      Hi Lisa, I spoke with the woman who runs the WRP program for the Dept. of Labor and mentioned your question. She said that to find out what is happening this year with WRP you should contact the campus coordinator at your daughter’s college. Numbers for this year will not be available until the program is complete at the end of the year.

  15. Martha J. T. says:

    Thank you so very much for the Self Advocacy Conference in Baltimore. My son Jeffrey was empowered and exhausted. The attention to detail and accommodations were stellar. A leader’s success can be found in her staff….kudos to you all!

  16. Barbara G. says:

    As a parent of an 18 year old daughter who is profoundly deaf and has Landau Kleffner Syndrome (aphasia), I greatly appreciate your article as I am struggling to get the support from family and friends to give her opportunities. She is graduating from high school this year but deferring her diploma to continue her education in a vocational program in Health Technology. She has been mainstreamed since 3 years of age and received a cochlear implant at 27 months, the first pediatric implant in Cincinnati. You are right on point that we need to move beyond awareness. The challenge now is to provide life skills and education for self sufficiency. I pray every day for the strength to get her the support before I am no longer able to do so. She deserves every opportunity life has to offer. Thank you for your insight.

  17. Steven M. says:

    My son, who has mutiple disabilities, is in college. The college is refusing accommodations that have helped him in the past. It seems now, in reality, the college is trying to fail him in order to get rid of him and keep only the “normal” students.

    Who can help us and help him fight for his rights?

    • Dave In Texas says:

      My experience as a long-term physically disabled person and confined to a wheelchair has been that colleges are one area of a disabled person’s life where accommodations are almost always made.

      So, I wonder what accommodations you are asking for? There is only so much a business/school can do to help accommodate a disabled person and it may be that in this situation you as a parent may need to step up and help your son figuring out how to work within the environment provided.

      I assume that a college degree for your soon will lead to a job. If that is the direction then accommodations will become even harder to come by so now will be a good test to see what the future may hold.

      Good luck.

  18. Rossella says:

    Buon Giorno

    Miss Rossella

    Oggi e’ una buona giornata ,vi auguro una buona giornata anche a voi,piena di amore-gratitudine e abbondanza

  19. Lisa P. says:

    Commissioner Lewis is a visionary and an extraordinary leader. We are fortunate to have her in place during this administration to help to create change for people with disabilities and their families. As a mother to a child with a sacramental disability, I thank her for her dedication in this administration.

  20. Nelsinia W. says:

    One more time: Thanks for your commitment to improve the lives of individuals with disabilities by improving the access to higher education and competitive employment.

    I wll pass this message around my networks.
    Nelsinia Ramos W., Wisconsin

  21. Pamela J. L., A.L.M., D.Ph. says:

    Let’s take disabilities of all kinds from awareness to respect, and help others to understand that they do not limit us; they only make us stronger and more creative in the ways we choose to navigate life. Our individual uniqueness should be so valued that the word stigma need never pass through our lips ever again.

  22. Terry says:

    I really have lost most hope for a future for me and my kids when when the Councilor in Rock Springs, Wyoming is getting away with unethical behavior and the secretary don’t give messages, and does and says unethical things. Nobody believes the disabled person. Even when you ask for a different councilor and they put you with the same one. When for a fact they have opened new cases with people not on any disability or SSI and they got all kinds of services that someone on SSI did not get. Why do you let that happen?

  23. Sgt. William T. H., Jr., USMC Disbled American Veteran says:

    I am truly 100% disabled veteran. I am seeking help for me and my 3 children – all adults. Now, it is very difficult to get assistance with helping my daughter Nicole and my 2 sons, Donovan and Taylor H. My oldest Donovan is now a US Marine like I was so long ago. I need help getting my daughter’s college paid off and she did not know that I was totally disabled while she was going to culinary college in San Diego, Ca. It is a mess and I suffer back pain and Bi-polar disorder, which I got from being stationed at Camp Lejeune. A lot of Marines were exposed to toxins in the water supply, I was one of those.