Policies to Address Poverty in America

Last month, the Hamilton Project revealed its 14 policy proposals that, when enacted together, wouldsucceed in Addressing America’s Poverty Crisis. The proposals created fit into categories of early childhood education, supporting disadvantaged youth, building skills, and improving safety net and work support. While the proposals certainly covered a wide range of solutions to the issue of poverty, the summit was far more successful in revealing the need to change the conversation of policy reform in the language of the long-term and holistic benefits.

The three policies to promote early childhood development included expanding preschool access for disadvantaged youth, addressing the parenting divide, and reducing unintended pregnancies for low-income women. The roundtable conversation for this set of solutions emphasized a multi-faceted approach to early education. For instance, the panelists explained that preschool access alone cannot eliminate the opportunity gap. As revealed in the research commissioned by the Hamilton Project, the advantages gained by preschool alone are no longer present once a child reaches age ten. In response to this, the policies work collaboratively to ensure that parent engagement persists after preschool to help keep the opportunity gap closed. Reducing non-marital and unintended pregnancies also addresses a specific feature of poverty that champions for proactive rather than reactive reforms. In order to gain support for spending for these policies, it is imperative to speak in long term benefit. The larger and more societal benefits come into play when viewing the proposals’ in terms of our workforce population and skill level, our spending on incarcerated youth and adults, and level of civic engagement.

A comparative conversation emerged during the dialogue centered on supporting disadvantaged youth. Policies discussed included the creation of mentoring programs (like IEL’s Ready to Achieve Mentoring Program), expansion of summer employment, assistance with remediation (a component of IEL’s Right Turn Career-Focused Transition Initiative), and expansion of apprenticeship programs. However, by the end of the panel, participants agreed that each proposal’s success depended upon the enactment of every other proposal discussed. Summer employment for youth can only be successful as experiential learning if the employer also acts as a mentor to the student. Students can only enter into an apprenticeship program if they are career-ready upon graduation, which in many cases requires remediation. Much of this aligns with NCWD/Youth’s Guideposts for Success, the framework detailing what all youth need access to in order to have successful transitions to adulthood.

The format and content of the summit certainly enforced the notion that the silver bullet strategy for policy reform is unreasonable. But are the 14 policies recommended together enough to combat the crisis of poverty in America? Perhaps the greatest conclusion that emerged from Addressing America’s Poverty Crisis is the absolute need for organizations to work together and collaborate to tackle these types of issues. It is also essential to understand and accept the reverberating effects that policies have in creating long-term change. A small policy that affects parent involvement in young children can have substantial impacts in ten to fifteen years in areas such as prison population, the skill of our workforce, and the education of future generations. Social policies are interdependent upon one another and can only become effective once we start viewing them as such. So while the policies presented last week might not themselves solve the issue of poverty, they enforce a necessary concept that we can only address America’s poverty crisis if we first learn to address the lack of communication among policies, programs, and agencies.

By Brooke Troutman, Intern for the Institute for Educational Leadership, NCWD/Youth’s host organization

Related Resources:

Posted in Career Exploration, Career Preparation, Collaboration, Community Partnerships, Education, Foster Youth, Guideposts for Success, Innovative Strategies, Tools | Tagged , , | Leave a comment

15 Years After Olmstead – Our Commitment to Community Living

The following is a crosspost from The White House Blog. The blog is written by Paulette Aniskoff, Deputy Assistant to the President and Director of the White House Office of Public Engagement.

Fifteen years ago, the Supreme Court ruled that under the Americans with Disabilities Act, people with disabilities cannot be unnecessarily segregated and must receive services in the most integrated setting possible. That ruling, known as the Olmstead decision, sparked significant changes in how federal, state, and local agencies support people with disabilities and their families.

The approach our Administration put into place in 2009 to help those with disabilities is showing tremendous results, and improving the lives of individuals with disabilities. Fifteen years after the ruling, the Departments of Housing & Urban Development (HUD), Justice, and Health and Human Services (HHS) continue to work together to make the promise of Olmstead real.

For example at HHS, the Administration for Community Living (ACL) was established in April 2012, creating a single agency charged with developing policies and improving support for seniors and people with disabilities. ACL collaborates with entities across the Administration to promote the goals of the Americans with Disabilities Act: to assure equality of opportunity, full participation, independent living, and economic self-sufficiency for individuals with disabilities.

All indications are that we are heading in the right direction. We are working to address many of the most imposing barriers facing those who want to live on their own: finding affordable, accessible housing and improving access to quality support and services tailored to each person’s goals.

Thousands of individuals have moved from nursing homes and institutions into affordable, accessible homes in the community. Working together, HHS and HUD have increased the coordination between supportive services and access to housing, as well as the number of accessible homes integrated in the community that are available for persons with disabilities.

Stories of the success of this approach offer great hope. For example, Baltimore native James is a former trucker who found himself in a nursing home after his wife passed away, his diabetes worsened, and he experienced severe medical problems. Thanks to a clergyman who provided a computer, James began to do research. He found a new doctor and identified a federal housing program that helped him move to his own apartment. He reports recovering confidence in making decisions for himself and says that returning to the community was “100%” what he had hoped it to be.

Chrystal lived away from her children in a nursing home for two years, and transitioned back home with help from Medicaid.  As a mom, her favorite part of the day is meeting her children as they get off the school bus. She’s now taking college classes with the help of adaptive technology, and looks forward to a brighter future.

Thanks to the recent HHS rules on home and community-based settings, states will be better able to define the best places for persons with disabilities to receive services, based on the person’s preferences, quality of life and access to the broader community. This will reduce isolation and segregation as well as protecting individual rights. States will need to consider many things — Can people eat food they like, when they want to? Choose their roommates? Have guests visit when they want? Come and go from their home as they please?

Having appropriate housing and services and supports is critical, but it is not enough. The Olmstead decision requires that individuals receive services in the most integrated setting appropriate to their needs — including employment. Recently, the Department of Justice entered into a ground-breaking agreement with the State of Rhode Island. This settlement vindicates the civil rights of individuals with disabilities who have been unnecessarily segregated in sheltered workshops and facility-based day programs. More than 3,000 people will now get the support they need to work in integrated workplaces. That is a big win.

The Olmstead decision, and the work we are doing across the Administration, reflect our nation’s commitment that all of our citizens have the right to live, work and play among their neighbors, in communities across our country, pursuing their American dream.

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“Same Struggle, Different Difference” – Opportunities for Togetherness

The following is a cross-post from (Work in Progress) the official blog of the U.S. Department of Labor. The blog is written by  Dylan Orr, chief of staff for the Department of Labor’s Office of Disability Employment Policy.

Each June, the LGBTQ+ community and allies commemorate Pride Month, promoting self-affirmation, dignity, visibility, inclusion and diversity within the community. In July, the disability community and allies commemorate the anniversary of the Americans with Disabilities Act, promoting the same principles in response to a similar history of exclusion and discrimination.

These periods of commemoration are clearly connected by a matter of days on the calendar, but as communities we don’t always make the connections around our common experiences and goals. I believe the disability and LGBTQ+ communities can find strength in working together. In fact, it is these commonalities and the opportunities they present that led me to serve as chief of staff in the Office of Disability Employment Policy.

Dylan Orr speaks at the Labor Department's Institute on HIV/AIDS and Employment.

From my earliest thoughts, I knew I was different. I knew because the outside world told me so. When my mom was pregnant with me she thought she was carrying a boy and chose the name Dallas. When I was born with the external indications that I was a girl, she instead named me Lily − as I like to joke, “the most effeminate name in the book.”

As I grew I didn’t feel like a girl or what that seemed to represent. I also thought there was something wrong with me. I felt shame about what I decided would be my little (or big) secret for the rest of my life. I was teased on the playground and questioned by adults as to “what I was,” and essentially told that I did not look or act the way I was “meant” to. And, I felt camaraderie with individuals with disabilities who, like me, were excluded or made fun of for how they looked or acted. So I stuck up for them and befriended them.

It would not be for many years that I would first hear the word transgender and eventually embrace that identity, and find love, community, support and pride. Along the way, I have come to recognize the multiple intersections within our communities – from being labeled by society as “other” or somehow different from what is “normal” mentally or physically, to negotiating disclosure, to facing barriers and disparities in critical areas of life like public accommodations, housing, education, employment, the legal system and medical care. These intersections have influenced me along my academic and professional path, and the disability community has become my community.

This week I was honored to participate in the Forum on LGBT and Disability Issues at the White House, and proud to share how ODEP is building bridges between the disability community and other marginalized populations.

One of the initiatives we are working on is called Add Us In, designed to identify and develop strategies to increase employment within the small businesses for individuals with disabilities, with an emphasis on ethnic minorities, the LGBTQ+ community, women and veterans. ODEP is also working to support the National HIV/AIDS Strategy by improving employment and economic opportunities for people living with HIV, a covered disability under the ADA, which disproportionately impacts the gay, transgender, African American and Latino communities.

Through my work, I am constantly reminded that, although much remains to be done, significant progress has occurred in just the last generation, for both the LGBTQ+ and the disability communities. Going forward, we must draw strength from each other’s lessons − and remind ourselves that when one person or group is marginalized or discriminated against, we all are.

I hope to one day live in a world that truly celebrates the wide variation of the human form, condition and experience. To get there, we all have a part to play. Change does not arise from pity, shame, exclusion or low expectations. It arises from empowerment, celebration of difference, and a willingness to take risks as individuals and communities − to take pride in who we are.

 

Posted in Collaboration, Community Partnerships, Culture, Disability History, Events, Guideposts for Success, Inclusion, Parents & Families, Pride Month, Self Advocacy | Tagged , | Leave a comment

From Jails to Joblessness:  Why Juvenile Justice-Involved Youth Need More Than Just a Job  

It’s well established that today’s chronic levels of youth unemployment cost our economy billions in lost tax revenue, both on the federal and state level.  Added to this problem is the sad reality of unemployed youth growing up to become unemployed adults.  Similarly, the staggering economic and human toll associated with youth who end up in the juvenile justice system, in its detention centers, and other locked institutions, is well documented.  But while practical experience suggests that gainful employment plays a significant role in reducing recidivism, it’s important to acknowledge that simply placing a young person in a job is no cure-all for recidivism. Studies show that although transitioning youth that hold jobs may be less likely to engage in criminal activity, there is no direct causal relationship between finding employment and less recidivism.  Instead, research suggests it’s actually the change in a young person’s antisocial attitudes and beliefs associated with crime – rather than the paycheck – that accounts for their shift away from crime.  Or, to put it another way, employment is only helpful to the extent that one can keep a job.  A new job must be coupled with new behavior in order to help lower the risk of recidivism.  Therefore, it is the transformation in behavior that ultimately enables an individual to retain employment and reap the recidivism-lowering benefits that having a job can provide.  Unsurprisingly, this finding is consistent with studies that suggest older individuals – who are already on a trajectory away from crime in terms of behavior – typically benefit more from employment programs than less motivated individuals.

In the context of youth workforce development, it’s the decision to live a more pro-social lifestyle and engage in pro-social activities that is integral to the success of youth employment programming.  More specifically, the Institute for Educational Leadership (IEL)’s research asserts that transitioning youth achieve better outcomes when they have access to five types of experiences, opportunities, and supports:  school-based preparatory experiences; career-preparation and work-based experiences; youth development and leadership opportunities; connecting activities (support and community services); and family involvement supports.

Right Turn Logo with tagline "Empowering Youth; Transforming Communities"In fall of 2013, this framework formed the basis of IEL’s collaboration with the U.S. Department of Labor for a national juvenile justice transition initiative, resulting in the selection of five organizations across the country to implement the Right Turn Career-Focused Transition Initiative (Right Turn).  Developed by IEL’s Center for Workforce Development (CWD) in consultation with experts in the field, Right Turn draws on years of research detailed in Making the Right Turn:  A Guide About Improving Transition Outcomes for Youth Involved in the Juvenile Corrections System on promising youth transition practices currently being implemented around the country.

While the overall Right Turn framework reflects IEL’s national focus on capacity-building in the workforce development system, the Initiative’s local reach is enhanced by each site’s unique organizational focus and service delivery model in each sites community.  What further distinguishes Right Turn from other youth transition programs is: 1) individualized, career-focused program activities based on three phase career development process of self-exploration, career exploration, career planning and management; 2) the Individualized Career Development Plan (ICDP) used to tailor services and resources; 3) disability awareness and other disability related issues; and, 4) the integration of youth voice as fundamental component of all youth programming, decision making and goal setting. Right Turn is also based on a number other IEL-created foundational materials, as well as IEL’s experience operating the youth career-focused mentoring model, Ready to Achieve Mentoring Program (RAMP).

Earlier this year, IEL staff visited each of the five Right Turn sites:  KentuckianaWorks, Louisville, KY; Peckham, Inc., Lansing, MI; Oasis Center, Nashville, TN; Playa Vista Jobs, Los Angeles, CA; and Goodwill Industries of Houston, Houston, TX.  While the specific processes for implementing the Right Turn framework vary from community to community, the fundamental program components – education and training, workforce development, case management, mentoring, restorative justice and community-wide violence reduction efforts – are well in place at each site as juvenile justice-involved youth begin to enroll in Right Turn and engage in an array of career development activities designed to improve workplace performance, retention and reduce recidivism.

In the coming months, local Right Turn staff will focus on coordinating local community-wide violence reduction efforts, developing restorative justice projects and integrating career-focused mentoring activities into their respective service delivery models, with the overarching objective of providing every Right Turn participant with meaningful work and training experiences ranging from job shadowing and apprenticeships to fulltime job placement.  Ultimately, we want youth workforce development and juvenile justice policymakers and practitioners to focus less on job placement as an outcome, and emphasize the importance of youth developing long-term career paths, complete with comprehensive, holistic systems of support that address individual youth needs and account for varying learning styles.

Upon completion of the initial Right Turn program cycle in 2016, IEL will be able to demonstrate that this comprehensive approach to youth workforce development effectively addresses the specific developmental needs of youth leaving correctional settings.  Through information sharing among Right Turn sites and with the juvenile justice community at large, IEL looks to ensure that best practices and lessons learned will not be limited to scattered communities, but will instead inform the entire field.  Our goal is for juvenile justice-involved youth, with or without disabilities, have access to the array of services and resources they need to succeed and thrive both in the workplace and in their personal lives.

By Byron Kline, Project Manager for the Right Turn Career-Focused Transition Initiative at the Institute for Educational Leadership’s Center for Workforce Development.

Related Resources: 

Posted in Career Preparation, Community Partnerships, Guideposts for Success, Positive Peer Influence, Research, Tools, Transition | Tagged , | Leave a comment

Promoting Good Mental Health for Today’s Workforce – and Tomorrow’s

The following is a cross-post from (Work in Progress) the official blog of the U.S. Department of Labor. The blog is written by Rhonda Basha, leader of the Office of Disability Employment’s Youth Policy Team. 

May is Mental Health Month, and although it is drawing to a close, it’s always worth considering the important role that mental health plays in our overall well-being. Mental Health Month is also reminder for us to consider ways to ensure people with mental illness receive the support they need to succeed in, or prepare for, employment.

Doing so is vitally important. One in four adults in the U.S. experiences mental illness, including depression, and those illnesses often manifest at a young age: more than 50 percent before age 14, and 75 percent before age 24. Unfortunately, only 20 percent of children with mental illness receive appropriate treatment and support, negatively impacting their success in school, and, in turn, employment.

"Mind Your Health" Mental Health Month 2014 logo

One of the biggest barriers to treatment — for both youth and adults — is a stigma which often erroneously equates mental illness with violence, despite research indicating that only 3-5 percent of violent acts are attributed to people with mental illness. In fact, people with mental illness are far more likely to be victims of violence than perpetrators of it.

That’s the bad news. But there is good news too, and public awareness efforts like Mental Health Month are helping to spread it. With increased education, we as a nation can erase the stigma associated with mental illness, and, in so doing, help the people affected by it get the support they need.

Every day, people with mental illness contribute considerable skills and talents to America’s workforce. Just a few examples include Matthew Staton, a veteran with a Traumatic Brain Injury and Post-Traumatic Stress Disorder, who today continues to serve his country in a civilian capacity; Anupa Iyer, an attorney whose personal experiences with mental illness led to a career in disability law and advocacy; and Louise Thundercloud, a home health aide with multiple non-evident disabilities.

For people like Matthew, Anupa, and Louise — and so many others — work actually plays an important role in staying healthy. That’s because employment is a key social determinant of health and increases one’s ability to live a satisfying, meaningful life. Of course, it also increases financial self-sufficiency. For these reasons, the Office of Disability Employment Policy educates about workplace policies and practices strategies, such as effective accommodations and flexible work arrangements, that can help today’s employees with mental illness succeed on the job — and tomorrow’s as well.

As part of this, in collaboration with its youth technical assistance center, the National Collaborative on Workforce and Disability for Youth, ODEP developed “Guideposts for Success for Youth with Mental Health Needs” and “Transitioning Youth with Mental Health Needs to Meaningful Employment and Independent Living.” Together with ODEP’s other youth-focused resources, these publications can help families, educators, and youth service providers promote positive transition outcomes and convey high expectations regarding employment for youth with mental illness — every month of the year.

 

Posted in Accommodations, Career Preparation, Disclosure, Employer Engagement, Guideposts for Success, Mental Health, Transition | Leave a comment

Expect. Employ. Empower.

The following is a cross-post from (Work in Progress) the official blog of the U.S. Department of Labor. The blog is written by Kathy Martinez, assistant secretary of labor for disability employment policy.

As assistant secretary of labor for disability employment policy, I am often asked about the key to advancing disability employment. Is it accessible technology? Better transportation systems? Accommodations? Stronger enforcement of the law? Benefits reform?

And my answer is always yes. And no. Those things are all vital, but each is one part of a whole. They are the essential elements that allow more people with disabilities to get hired and succeed on the job, which then has a cyclical effect that feeds back to further a culture of inclusion.

The first step in this cycle is expectation, which starts at home, like it did with me. Like all young people, youth with disabilities must grow up expecting to work and succeed, and the messages can’t start early enough. This expectation must then follow them through school and college and into the workplace, another critical step in the cycle.

Employers must foster flexible work environments open to employing the talents of allqualified individuals. This is not hard. Yet, I’m often asked by employers, “How can we foster a more disability-inclusive culture at our company?” My answer is simple: Hire people with disabilities. Nothing is more effective than having people with disabilities as part of the team.

When high expectations meet inclusive workplaces, we reach the final step, and what my dedicated colleagues and I ultimately seek to achieve: empowerment. At ODEP, we don’t just work to increase the employment of people with disabilities, we work to empower them. We work to ensure they have equal opportunity to contribute their skills and talents, for their benefit and society’s as a whole.

Work is the primary route out of poverty to self-sufficiency. But for so many of us — whether we have a disability or not — it also means more than a paycheck; it offers purpose and the opportunity to lead an independent, self-directed life. On multiple levels, work empowers us. And with increased empowerment, comes increased expectation, and the cycle continues.

This year’s National Disability Employment Awareness Month theme sums up this cycle in three brief but powerful words: Expect. Employ. Empower. Although recognized in October, the NDEAM theme is announced each spring to assist individual workplaces and communities in planning events and activities.

This year, we enlisted the public’s help in developing the theme. We were pleased to receive more than 125 great suggestions through an online dialogue in which anyone could submit ideas. We then narrowed this list based on input from members of our Campaign for Disability Employment and ultimately arrived with this year’s theme.

I’m so pleased with the result, because those three words — Expect. Employ. Empower. —clearly convey that advancing disability employment is about more than any singular thing. Rather, it’s about creating a cycle of inclusion.

Posted in Career Exploration, Career Preparation, Employer Engagement, Events, Job Shadowing, Parents & Families, Transition | Leave a comment

Cat Videos, Game of Thrones, and Mental Health?

A four-panel black and white line drawing cartoon depicting 4 different interactions between 2 people. The first says "WHEN WE BREAK A BONE:", and shows the breakee excitedly telling a smiling friend "sign my cast!". The 2nd panel says "WHEN WE GET A BAD CUT:", and has the injured person excitedly telling a slightly shocked looking person "Check it out! 12 stitches!" The 3rd panel says "WHEN WE GET THE FLU:" and shows what looks like a Facebook update saying "I just threw up over everything I own. I need an old priest and a young priest.", and there are 21 "likes"; and the 4th panel reads: "WHEN WE STRUGGLE WITH MENTAL HEALTH ISSUES:" and one person says to another whose arms are crossed "hey."]

PHOTO DESCRIPTION: A four-panel black and white line drawing cartoon depicting 4 different interactions between 2 people. The first says “WHEN WE BREAK A BONE:”, and shows the breakee excitedly telling a smiling friend “sign my cast!”. The 2nd panel says “WHEN WE GET A BAD CUT:”, and has the injured person excitedly telling a slightly shocked looking person “Check it out! 12 stitches!” The 3rd panel says “WHEN WE GET THE FLU:” and shows what looks like a Facebook update saying “I just threw up over everything I own. I need an old priest and a young priest.”, and there are 21 “likes”; and the 4th panel reads: “WHEN WE STRUGGLE WITH MENTAL HEALTH ISSUES:” and one person says to another whose arms are crossed “hey.”]

 

This past weekend, I (assuredly along with milennials across the country) fell down the all too familiar internet searching rabbit hole. In the hours lost watching cat videos, Game of Thrones GIFs, and tutorials on how to properly fold a fitted sheet, I discovered the above comic courtesy of Beatrice the Biologist. The 4-panel comic concisely speaks to our ability to discuss, and even revel in, physical illness and injury, but an overwhelming silence around mental illness and related mental health needs. This is an issue I face regularly in my own life as a person with two disabilities, one a very apparent physical disability and the other an invisible anxiety disability.

Disability disclosure was a never a topic to which I gave much thought. I roll into a room and my disability is at least superficially disclosed, but disclosing an invisible disability, like a mental illness is much different. There are some settings, like with a group of close friends or with a medical professional where I felt more comfortable talking about my disability, but there were also times in school or at various internships or work experiences where I was not as comfortable with disclosure, yet needed certain supports or reasonable accommodations that came from talking about parts of my disability.

For all youth with disabilities, choosing when, where, and how to disclose is a very personal decision.  NCWD/Youth’s The 411 on Disability Disclosure: A Workbook for Youth with Disabilities can guide young people throughout this process, helping them to determine the advantages and disadvantages of disability disclosure in a variety of settings and how to do so in a way that works best for them.  Understanding disability disclosure for youth with mental illnesses is critical due to much of the stigma around mental health concerns, as illustrated in Beatrice the Biologist’s comic. Fortunately, other art and photography projects like What I Be Project or Burst the Silence are recognizing this need and are helping young people to share their mental health needs with a community of empathetic individuals. (If you choose to take part in one of these or similar a project, make sure you’re aware of the related online disclosure factors by checking out NCWD/Youth’s Cyber Disclosure for Youth with Disabilities.)

It was important for me to learn how to talk about my invisible disability (even if I did not always want to put a label on it), because there are certain things that we as young people with mental health concerns need in order to be successful that our friends might not need. I needed a network of support through family and friends, medical professionals to whom I felt comfortable asking a lot of questions, and strategies for addressing some of the negative reactions I faced during disclosure.  Take a look at the Guideposts for Success for Youth with Mental Health Needs for these and many more. Find out what you need to be successful in school, work, and life. The sooner you know what you need, the sooner you can start asking for it! Now, back to your cat videos!

Happy Mental Health Awareness Month! #ISpeakUp #MHM2014

Related Resources:

Posted in Advocacy, Career Preparation, Communicating with Youth, Disclosure, Guideposts for Success, Mental Health, Positive Peer Influence, Transition | Tagged , , , , , , , | Leave a comment

Intellectual Disability and a Path to Overcoming Stigma: My Conversation with Sam

The following cross-posted blog features an interview with Sam, a member of NCWD/Youth’s 2013 YouthACT cohort from the Ala Costa Adult Transition Program (ACAT). The original post is available in full. 

We started the ACAT program in 2009 with six students. Sam is one of those original six. He was 18 years old then, but now 23, he participates our ACT Adult Program. He is very friendly and laughs easily. One of my great joys in the program has been watching Sam’s confidence grow over the years.

Sam was ACAT’s first student to run his own IEP meeting and through that process, he and I had an opportunity to discuss what his disability meant to him. Intellectual and developmental disabilities are often framed within the construct of tragedy and burden, but the first time I asked Sam how he thought his disability affected him, he said, “I get nervous and I have trouble remembering things.” That was it, hardly tragic or burdensome; he needed support just as we all do. 

This year Sam became our first participant in the Youth Action Council on Transition (Youth ACT) which is a nationwide program designed to teach leadership and advocacy skills to youth with disabilities. 

Sam in Washington, DC

Sam in Washington, DC

This is our conversation: 

Brent: I know you have trouble remembering when you were placed in Special Eduction, but you believe it started in high school? 

Sam: Yes, it was at Berkeley High. I did not have Special Education until high school; not in middle school.

Brent: Why were placed in Special Education?

Sam: Because my learning was bad. It’s hard for me to say. I had trouble getting my homework done. Actually, my reading is good, but I usually had trouble taking notes or when a teacher explained something, I don’t get all of it, and when I get homework at the end, I struggle with it. In middle school I started having trouble with my homework.

Brent: Do you remember your first IEP?

Sam: Yeah, we had an IEP. I think that was my first IEP. I remember seeing a psychologist. He came to see me in class. I also remember they put me in speech. Speaking was hard for me; I stuttered.

Brent: Did you understand that you were being diagnosed with a particular disability or offered services when the psychologist was talking to you?

Sam: No, the psychologist did not talk about my disability. I didn’t really know anything.

Brent: Do you remember how you felt during that time? 

Sam: Different; I felt it was a bad difference for me, because I did not know what was going on for me, and how I’ve been put into special education and they were talking about putting me in a transition program when I got out of high school. I mean, my IA teacher helped me plan all this, the psychologist, speech, case manager.

Brent: You ran your own IEP meetings as part of the ACAT Program, I remember that this was that the first time you saw the diagnosis of “Intellectual Disability”.  

Sam: Back then I never heard of that word, “Intellectual Disability”. I remember in my old IEP meetings the teachers used to say the word, I don’t want to say it. I can just say, “MR”. I didn’t appreciate it. I was really embarrassing to be called that word. it’s disrespectful. Back in high school, I was treated with disrespect because that word was used. 

Brent: You felt upset being defined as “MR”?

Sam: I felt I was really being treated the wrong way when that word is used. it’s like, whenever it was used, it felt like I was not independent, learning bad, struggling with homework. I felt like my life was uncomfortable.

Brent: I remember you saying once that you thought your parents were disappointed when you got diagnosed?

Sam: Yeah, they were like, why is your learning so bad? I think now they are over it. They are proud of my independence. 

Brent: I think they are proud of you too. We’ve talked in the past about you defining your disability in terms of how it feels to you and how you think it affects you. Can you talk about this? 

Sam: What it feels like having my disability is that it feels different. How it affects me is that it gets in the way of me; it gets into my mind, and prevents me from going to college. That I couldn’t go to college just to take classes because it was so hard. What it feels like me having a disability is that I feel like I am somewhere that’s different than being on the right way. 

Brent: What struggle is hardest for you?

Sam: I would say classes is the most of what I struggling with. The other things I am getting the hang of, but classes are hard. That’s what the disability is like for me. It makes me nervous to go to school. I try to be independent in my classes, because of my disability it’s difficult to handle complicates things. That is my disability.

Brent: I know so far college has been frustrating for you and we are working on ways to help. I know you’ve accomplished a lot of good things. Can you tell me about some of those? 

Sam: What I’ve accomplished so far is managing my money and I can get around the community. This changed my life in a better way; I can get around. This is different from high school, where I could not travel by myself.

Brent: Learning to travel was a big deal for you?

Sam: I was really nervous at first, but my confidence was like, “I want to try to do this, and learn it.”

Brent: This sounds just like you! You get nervous and then you figure out how to try things and overcome those nervous feelings.

Sam: Yeah, now I learned how to do this and it does not make me nervous

Brent: Now with the YouthACT program, you’ve had a chance to do a lot of things you’ve never done before.

Sam: I’ve never been on a plane or to another state. I’ve done that now. I went to Washington DC as part of YouthACT. 

Brent: What did you learn by going to the YounthACT training in Washington DC?

Sam: I am learning how to be a leader and how to be an advocate for other youth with disabilities; to transition into adulthood and independence.

Brent: And you are currently working on a project about the disability rights leader, Ed Roberts?

Sam: Yep, mostly telling people about Ed Roberts and disability rights.

Brent: What else are you doing now that you’ve never done before?

Sam: I have a job. In high school they had a workability program, and my IA went there with me. 

Brent: Did you find it on your own? What is that like?

Sam: I found it on my own. Before, I never knew about having a job and making money. It makes me feel happy. I would say I feel some confidence for jobs, if I am able to do it, I just do it.

Brent: Do you feel like you have overcome some of the earlier difficulties?

Sam: I feel like I am really getting the hang of myself. I am not backing away just because I have a disability. I try to move myself toward new things, even if I never experienced it, I try it until I say, “Oh, I like it!”

Brent: Do you feel proud of yourself?

Sam: Yes, I feel proud of myself.

Brent: I feel proud of you too. Do you say it is possible to have an intellectual disability and be proud of yourself as a disabled person?

Sam: I would say yes. My life has been changing a lot. I am really confident, and my independence is really good. I am thinking of moving on.

Brent: Do you think it is possible for other disabled youth to accomplish what you have? 

Sam: Yes, if they are learning and getting there. For me, I have a disability. I don’t go all the way, I just take it slowly, step by step, until I reach far away. I am proud of myself for doing all the stuff that I’ve been through.

Brent: Is it ok for me to post this interview online for people to read?

Sam: I am comfortable wanting people to read about my life. When they read it, they’ll say, “Wow, he’s doing awesome!”

Summary

Sam’s discussion of being referred to as “MR” was uncomfortable for him to talk about. He is right, it is an offensive term and a horrible label to saddle someone with. I’ve never met a person diagnosed as mentally retarded who did not feel shamed by it and yet we only officially changed the term to intellectually disabled a few years ago. The process of transition to adult life is made even more difficult by shaming and stigmatizing within systems of services for ID/DD youth. 

I am proud of the wonderful things Sam is accomplishing. I know too that it has not been easy for him and that every move forward has come with a great deal of anxiety. The depth of his accomplishments needs to be appreciated through this lens. And when we view them through the lens of the stigma as well, the real beauty of his accomplishments come into better focus. 

I hope that the support he has received in the ACAT and ACT programs has helped Sam by providing a space for him to take risks without fear of judgement or shaming. But the praise belongs to Sam. This has been his hard work, his journey and his success. I can’t think of a better person to take on the role of youth leader and advocate. 

By Brent White, Adult Program Director with Ala Costa Centers. 

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Posted in Accommodations, Career Exploration, Career Preparation, Collaboration, Communicating with Youth, Community Partnerships, Developmental Disability, Disability History, Disclosure, Education, IEP, Self Advocacy, Self Determination, Transition, Youth Leadership | Leave a comment