Expert Update - Georgia Council on Developmental Disabilities

Expert Update: Create Change Together

The mood was somber as we stood in the dark outside the NAACP offices in Columbus, GA. On that cold winter evening on January 27, 2015, nearly 150 advocates for people with disabilities, NAACP leadership and concerned community members listened as Dorinda Tatum, organizing director of Georgians For Alternatives to the Death Penalty and Community Builder for GCDD’s Real Communities Initiative shared the news: all avenues of appeal were denied and Warren Lee Hill was to be executed that evening.

In turn, I addressed the large crowd, which was stunned into silence, save for soft weeping by some. Choking back tears, I shared that I had been one of the “experts” who had evaluated Hill. I had reviewed piles of evaluations and records and after my review, I concluded that Hill was a person with an intellectual disability.

I was not the only person who evaluated Hill. A parade of experts and doctors offered their conclusions to the court, including new statements by three doctors who had examined him in 2000. Subsequent reviews in 2013 used improved scientific testing methodologies to change their initial reports. In the end, six doctors, including those hired by the prosecution, reviewed the facts of the case and ultimately agreed: Warren Lee Hill was a person with an intellectual disability.

Georgia law and a 2002 US Supreme Court decision of Atkins v. Virginia, prohibit the execution of people who have intellectual disabilities. There we were, in 2015, huddling together, candles lit, waiting as Hill’s execution was being carried out.

I told the crowd that had Hill been in any other state in the nation, we would likely not be standing here, awaiting word of his death. We would not be here, holding vigil. It comes down to the level of proof required to prove that a person has an intellectual disability.

Georgia has the toughest standard in the nation for proving intellectual disability. It requires capital defendants to prove beyond a reasonable doubt that they are intellectually disabled in order to avoid execution on those grounds.

Hill’s lawyers argued Georgia’s standard is unconstitutional because mental diagnoses are subject to a degree of uncertainty that is virtually impossible to overcome. How many more experts would have to agree before that burden were achieved?

I am not new to reviewing an individual in a determination of disability process. I wrote one of the first evaluations of L.C. in the Olmstead decision. I evaluated people with intellectual disabilities in nursing homes to help them qualify for community-based services. This was not my first evaluation; I know the score.

For over 25 years, I have worked in Georgia supporting people with disabilities when the justice system has become a juggernaut that has run them over. People with disabilities risk exploitation, longer sentences, lack of supports and violence within this system.

Research has shown these poor outcomes tie to people not knowing their rights, not understanding the process, being unwilling to disclose disabilities because it makes them a target in jail/prison. In the justice system, there is a lack of understanding of disability issues by law enforcement, prosecutors, public defenders, judges and jail staff.

Although there are training efforts to help different sectors of the justice system understand the vulnerability of people with intellectual disabilities, they are woefully unfunded/under-resourced.

After Hill was put to death and in the days following his execution, I found myself driving and having to pull to the side of the road to weep. I am haunted by this singular truth: Even with all the hard work by his legal team, those expert reports and across the board agreement about his intellectual disability... we had not been able to save Warren Lee Hill.

The night of the vigil I asked people to remember him and that even though the work is hard, there are people counting on us to step up and do the hard work, to change those things that are unjust. When people are alone and caught in a wheel of hard times and injustice, we must be courageous and turn towards them instead of away from them. We need to join together and ask legislators to change the law, change the burden of proof requirement to be in line with other states. We need to collaborate with other groups who are interested in criminal justice issues, knowing that we do not need to agree on everything, but that there is common ground where we can create change together.

On January 27, I stood alongside scores of advocates for people with disabilities, with prayers by Reverend Bill Gaventa, being led in song by the leadership of NAACP Columbus Chapter President Tonya Ganza and Past President Edward Dubose. That night, there was an important spark of connection. My heart was heavy, but in that moment, it became a place for us to move forward together.

LESA NITCY HOPE, PhD, LMSW, QDDP has worked for the past 25 years on supporting people with disabilities and their families through advocacy, education, family support and social services programs. Her areas of interest are looking at the resilience and many gifts that people with disabilities possess, even as they are disproportionately impacted by poverty, isolation, poor educational supports, victimization and challenging interactions with the justice system. She has worked as an expert witness and evaluator on disability-related issues in a number of criminal and civil cases.

Expert Update: Creating the Gold Standard of Disability Hiring

This is an excerpt from Randy Lewis’ talk at the Impact Business Speaker Series at Georgia Tech’s Scheller College of Business.

My son, Austin, has autism. He didn’t speak until he was age 10. He’s trying to make up for lost time if you ever get a chance to talk to him. He was the first student with autism to go to his school. He drives. He’s sometimes my chauffeur to the airport. He has a great sense of humor.

He has no friends. He has never been invited to a party and never received an email. He probably reads at about a fifthgrade level. I’ve never played a game with my own son. Not even a game of catch. And most people like him would never be offered a job.

Randy Lewis with his son, AustinRandy Lewis, former Sr. Vice President of Walgreens, Peace Corps volunteer, Fortune 50 executive and accidental advocate, led Walgreens’ logistics division for sixteen years as the chain grew from 1,500 to 8,000 stores. Lewis introduced an inclusive model in Walgreens distribution centers that resulted in 10% of its workforce consisting of people with disabilities who are held to the same standards as those without disabilities. Its success has changed the lives of thousands with and without disabilities and is serving as a model for other employers in the US and abroad. He is pictured above with his son, Austin.A job can mean the difference in life. Security, friendships, possibilities. But when it comes to getting a job – what I do know as a parent and as an employer – is that people with disabilities die the death of 1,000 cuts. The unkindest of which is a belief by most people that people with disabilities really can’t do the job. It’s a great thing to do if you can afford it, but otherwise it’s a charity thing to do and that’s what I knew [Walgreens] was facing.

We started out trying to hire some people with disabilities. We hired some groups who were bringing in people with disabilities and we gave them certain tasks to do. We were getting them team member T-shirts, name badges just like everyone else. I remember this woman comes up to me, in our Dallas center, and she shows me a picture. Now, I didn’t know if she worked for us or was part of the group, but she must have seen the confusion on my face because she followed with, “Oh, I’m not one of them. I’m their sponsor.”


It struck me like a slap in the face. Those folks were not doing traditional jobs, they weren’t earning the same pay, and they weren’t with “us.” So, I knew we had to do better.

So, we said, let’s ask for volunteers who would like to work with some of the folks in that group, let’s hire them and give them a chance.

One of the people that we hired was a man named Chuck. Chuck is on the [autism] spectrum. He had graduated from college with a degree in accounting. He had never been able to get a job, but we hired him. We learned that Chuck’s favorite color was purple because every time a purple token would pass through his area, Chuck would stop, let out a yell of joy, and start dancing. Something we had never seen.

So maybe this is something we can tolerate in a work environment? Which would we prefer from our employees? Dancing or complaining? Easy choice – dancing.

Perhaps there’s a group of people out there like us who could do the job, but would never be allowed to because of these invisible walls we have around ourselves.

So, we decided that if we’re going to hire people with disabilities, we’re going to start with jobs. And we want a big number, because if this works, we want to be able to demonstrate to the world that people with disabilities can perform as well as anybody else.

If we hire one or two, people can say, “That’s great, Walgreens. You’re a big company. You can afford that.” We wanted to demonstrate that beyond a reasonable doubt, people with disabilities can do the job – and not just jobs for people with disabilities.

Business is not a charity. We have shareholders that are just as demanding as any other company. People with disabilities had to do the same job, receive the same pay and be evaluated on the same performance scale. We needed to measure it, so that’s why we said one-third of the workforce had to be people with disabilities. We said we’re going to change the way people view people with disabilities.

We changed our hiring process. Traditionally, we would put an application out there, and we’d screen them using a computer. We’d pre-screen them, call them up on the phone, have a little pre-interview, and you get called in for a final interview. That’s the process. But we knew people with disabilities, people like Austin, would never be able to get through that process. We needed an alternative.

Now, my son, Austin, exposed me to all the challenges, but he also exposed me to all the possibilities and opened up my thinking. That’s how we knew what we had to do. We needed a way for people with disabilities who can demonstrate their ability to do the job in nontraditional ways.

We found an expert on people with disabilities. We asked them to find 200 people for our Anderson, South Carolina center – 75 on day one and 10 a month thereafter. They understood our jobs, went out and then did the pre-screening. They found the people that they thought would be successful in our environment. Then, we would bring them in, provide the job coaches, and Walgreens would provide supervision and let them do the work on a trial basis. We’d pay them during this period and when they’re successful, we hire them.

One of the people who heard about this was Desiree, who lived in San Diego. Desiree has a rare muscle condition that requires she use a walker every once in a while. She packed up her bags, moved her family across the country a year – a year – before we opened, just for the chance to be in line. She’s a manager at that building today. A person who we would have never hired, because we would have assumed that it would be too difficult for her to get to all the parts of the building, is now a manager of the center in South Carolina.

People ask, “How did this turn out?” This turned out to be the most productive center in the 100-year history of our company. What we had hoped to achieve worked. People with disabilities perform the same work safer and have less workers compensation costs. That’s a big concern among employers.

We also heard, “It’s going to cost more,” or “This is more dangerous, so there are going to be more accidents,” or “Their health costs are going to go up.” Again, these are things that are claimed, but have no evidence in data. We did not find that. Our healthcare costs did not go up, it was the same. Our retention was better and our absenteeism was less.

The center is the most productive in the company’s history. Over 30% of the workforce has a disability. Most had never been able to secure a steady job before. Within four years, over 1,000 people with disabilities were working in centers across the country.

This is a group that shows up. This is all that we hoped for.

To read more in Making a Difference magazine, see below:

Download pdf version of Making a Difference Fall 2017    Download Large Print Version of Making a Difference Summer 2017





Expert Update: How Olmstead Settlements Are Focusing on Quality Services

In America, the phrase "Civil Rights" evokes powerful emotion, conjuring up visions of the 1960s, of Dr. Martin Luther King, Jr. on the steps of the Lincoln Memorial and of students at lunch counters and university doors.

These were the disability community's models for civil rights advocacy. This year, we celebrate landmark anniversaries of the Civil Rights Act of 1964, Brown v. Board of Education and Olmstead v. LC. These legal landmarks, together, show that disability rights are an essential part of the civil rights movement and that separate is not equal – for any group of people.

In Georgia, the home of the Olmstead decision, the State and the Department of Justice are concluding the fourth year of a multi-year Agreement to transform the state's service system for people with intellectual and developmental disabilities and mental health disabilities. We are working together to fulfill the promise of these legal landmarks for citizens with disabilities.

The Olmstead case has rightly been called the Brown v. Board of Education of the disability rights movement. Olmstead marked the first time the Supreme Court formally recognized that unjustified segregation of people with disabilities is discrimination in violation of the Americans with Disabilities Act (ADA). The Court recognized that unwarranted "confinement in an institution severely diminishes the everyday life activities of individuals, including family relations, social contacts, work options, economic independence, educational advancement and cultural enrichment."

At the Department of Justice, we believe the ability to be part of your community is the right from which all other rights flow.

Since 2009, the Department of Justice has participated in approximately 44 Olmstead matters in 24 states. Georgia is one of eight states to reach Olmstead settlements with the Department that are directly affecting over 46,000 people with intellectual, developmental, mental health and physical disabilities. Nothing in the ADA or the integration mandate is limited to residential settings. Olmstead points to a variety of everyday life activities that are harmed by unnecessary segregation. The Department has expanded its Olmstead work to look beyond just where people live to examine how people live. Simply moving someone from an institution to a community-based residence does not achieve community integration if that person is still denied meaningful integrated ways to spend their days and is denied the opportunity to do what we all do – work in the community.

Olmstead means that people with disabilities have a right to receive services in the most integrated setting appropriate for them. Our settlements don't focus on closing institutions (although to date, 17 states across the nation have closed all of their large state-run ICFs). Our settlements focus on making sure quality services are available in people's communities – so people have viable options to receive services without submitting to unnecessary segregation.

Our Olmstead work depends on the work of local advocates – people with disabilities, parents, service providers, advocates and others – who let their policymakers know they want to live in their communities – who let us know where this civil right is being systemically violated – and who support people as they make their way into the community. Policymakers on every level of government have become partners in the transformation of systems that for too long perpetuated unnecessary institutionalization.

For so long people with disabilities have been marginalized and discounted, and assumed to be incapable of contributing meaningfully. Public and private services were designed within this mindset. Those attitudes have shifted, and people are telling us how their lives have changed for the better as a result. But much work remains. We have no illusions about the significance of the challenges ahead. But we will make progress, working together, toward fully enforcing the civil rights of all of our citizens.

by Eve Hill
Deputy Assistant Attorney General in the Civil Rights Division of the US Department of Justice.

Expert Update: Inclusive Post-secondary Education for Individuals with Developmental Disabilities

By Gregory Blalock

Over the last 40 years, we have seen tremendous gains in opportunities for individuals with disabilities. In the K-12 education system, federal and state laws mandate schools provide an appropriate education to students in the least restrictive environment. Although a lot of work remains to assure social justice for those with developmental disabilities, it's important to note how past progress continues to open new doors for such individuals.

Access to Higher Education

We are seeing a new generation of young adults with disabilities who have the skills and motivation to benefit from higher education. Although it may have been unthinkable just a couple of decades ago, today there are many students with disabilities who are succeeding on major college campuses throughout the country. This is due, in no small part, to the recognition that those students have the potential to become working, tax-paying and civically engaged citizens if given the opportunity to further develop their academic and personal selves through education.

As a result of this recognition, over the last decade there has been a great expansion of opportunities in higher education for persons with developmental disabilities, particularly those with intellectual disabilities. The first of these programs emerged in the 1970s, yet there were relatively few and exclusive of typical college programs. Today, there are over 200 programs at major college and universities throughout the country that actively support the engagement of students with disabilities on campus. 

Many of these target inclusive opportunities for coursework, student life and career development. Although multiple reasons exist for the relatively  recent increase in the existence of such programs, among the more salient are the following three:
1) Post-secondary education provides a valuable educational avenue for many individuals with intellectual disabilities who traditionally have had no educational options beyond high school. University campuses provide fertile ground for those seeking to develop a broader understanding of what it means to be an independent, actively engaged adult within the community.
2) Just as the inclusion of students with developmental disabilities into the K-12 general education classroom provides important social and academic benefits to all students, such inclusion on college campuses provides the opportunity to extend diversity to all college students. Because many of today's college students will be tomorrow's employers, those who graduate from universities that ground them in a better understanding of diversity in the real world will be in a much better position to compete in a global market.
3) The Higher Education Opportunity Act of 2008 explicitly provides support for individuals with disabilties who are seeking post-secondary education opportunities at qualifying institutions of higher education. This means, among other things, that such students are now eligible for federal financial aid including Pell Grants and student loans to cover the cost of higher education. Given that individuals with disabilities come from disproportionately lower income backgrounds, this is an important support.

This last point represents the federal government's overt recognition that higher education should be an option for a greater diversity of citizens as we continue to focus on assuring a globally competitive workforce within our nation. It is, after all, higher education that continues to have a profound effect on the innovation and employability of our communities. Statistics show the unemployment rate for college graduates with a bachelor's degree or higher is half that of their peers with no post-secondary education. In June 2012, unemployment rate of those with only a high school education was 8.4%; it was only 7.5% for those who had completed at least two years of college (United States Department of Labor, 2012). Thus, a college education has an important effect on the employability of an individual today.

The unemployment rate for people with intellectual disabilities is particularly problematic. One need not look far to realize how much more difficult it is for individuals with intellectual disabilities to find stable, competitive employment within their community. Although this challenge requires a multi-dimensional solution, one important solution is to expand access to college for people with intellectual disabilities. Just as with typical adults, college access for adults with intellectual disabilities not only provides valuable career-related knowledge and skills, but it also provides authentic, multi-dimensional social relationships crucial to widening one's circle of support and connections within the community. In this way, college attendance can make a profound difference in the employment outcomes for youth with intellectual disabilities.

Unfortunately, in many states there are few colleges that offer the opportunity for attendance to people with intellectual disability. For example, to date, out of the University System of Georgia's 31 four-year institutions, only one, Kennesaw State University, provides an avenue for people with intellectual disabilities to meaningfully participate as a student. KSU's innovative two-year program, has matriculated talented students who have travelled back and forth from home to school, up to two-to-three hours each way, to attend classes. Just as their students have dedicated themselves to overcoming great obstacles to obtaining a higher education, KSU has dedicated itself to seeing that such students can sit in their classrooms and learn alongside other university students.

Higher Education Expands in Georgia

The expansion of inclusive post-secondary educational opportunities for Georgians with developmental disability is growing. Through the tireless efforts of many people at the national, state and local levels, the foundation exists on which other public and private universities are able to develop their own programs to meet the needs of thousands of motivated and talented Georgians who are currently unable to access post-secondary education.  The Georgia Inclusive Post-secondary Education Consortium, (GAIPSEC), supported by Georgia State University's Center for Leadership in Disability, is instrumental in working with stakeholders throughout the state to collaboratively address the dearth of post-secondary options for people with developmental disability.

The impact of GAIPSEC's work is evidenced by the fact that within the last few years, inclusive higher education programs for individuals with developmental disabilities are being developed on several campuses throughout Georgia. At the university level, developing such programs is a daunting task. Developing a new program at an Institution of Higher Education (IHE) is so much more than recognizing the need. Every IHE has a multilevel process for developing and gaining approval for new programs that ensures such programs are both rigorous and founded upon sound academic principles. University program development requires the adherence to standards set by a university's governing board (i.e., a Board of Regents), the state legislature, and accrediting agencies--all of which are in place to assure that every program provides an effective education and operates efficiently in a manner that is conducive to sustainability in the long-term.

This process requires the commitment of university administration, and that of the faculty and staff who are instrumental in supporting each student's university experience from application to college life to graduation to career life. This way, students are assured that university programs provide a high level of academic and personal enrichment to support their educational and career goals.

As such, the development of higher education programs for individuals with disabilities can be particularly challenging. There still exists little experience on campuses with establishing the relatively few, but key, supports that must be in place in order to make such programs successful. For example, most four-year institutions' general admission standards require a regular high school diploma. The fact that most potential students with disabilities have earned an alternate high school diploma means that a university's admissions system must be slightly altered to allow otherwise qualified applicants who earned an alternate high school diploma to matriculate as regular college students within the inclusive post-secondary program. For many universities, such changes are difficult to make without clear precedent.
Fortunately, there are a growing number of universities who are doing just that. That is building flexibility into their systems to allow a greater diversity of students on campus.

Building Diversity

Because of outdated stereotypes and unfamiliarity with the social construction known as intellectual disability, few university personnel understand how successful many individuals with disabilities can be with university coursework. Yet, over the last decade there is an emerging literature that shows how students who have disabilities can benefit from, as well as contribute to, both college classes and the university campus. An increasing number of university faculty members are vocal proponents of students with disabilities being on college campuses and how such students positively affect the level of discourse both inside and outside the classroom.

The GAIPSEC has been instrumental in pulling universities and community agencies together to increase the higher education opportunities for all people.

At Columbus State University (CSU), faculty and administration are working to establish an inclusive post-secondary program for individuals with intellectual disabilities. Dubbed the COUGARS program (Comprehensive Opportunities to Provide University Guidance, Academics and Relationships), it seeks to provide qualified adults with intellectual disabilities the opportunity to attend college and complete a rigorous university program alongside typical university students. The development of a post-secondary program for those with intellectual disabilities directly addresses CSU's mission to prepare students though academics and community engagement. Although this program is still in development, it's important to note that it is one of several around the State working to open its doors in
the near future.

While we continue working to expand educational opportunities to children within our K-12 buildings, we are seeing a new generation of high school graduates with developmental disabilities push open the doors of opportunity to the hallowed halls of higher education.

Expert Update: Rethinking the Developmental Disability Definition

Screen Shot 2014-10-21 at 3.24.25 PMI want to begin this article with a confession: I broke my neck in 1973 at the age of 27. This is the same age that Janice Joplin, Jimi Hendrix and Jim Morrison committed suicide. Their suicides have nothing to do with the rest of the article except for the fact that I wanted to get
your attention and the number 27. Another confession: because of that number 27, I am a D (disability), not a DD (developmental disability). I actually didn't realize that when I was lying in bed in the Bronx Veterans Affairs Hospital. Nor did it come up when I became active in advocacy in Houston, TX with the Texas Paralyzed Veterans and the Coalition for Barrier Free Living. It actually never came up when I became active in the Coalition of Texans with Disabilities nor when I was on the board of the American Coalition of Citizens with Disabilities.

When I was hired as coordinator of Handicapped Student Services at the University of Houston, they never mentioned it during my job interview. When I got involved with ADAPT (originally Americans Disabled for Accessible Public Transit) in 1984, neither ADAPT's founder Wade Blank, its national organizer Mike Auberger, nor renowned community organizer Shel Trapp ever asked the "D" or "DD" question.

When I first got arrested for civil disobedience in Washington, DC blocking an inaccessible bus, the arresting police officer never asked the question. I first became aware of the distinction between D and DD was when I served on the board of the National Association of Protection and Advocacy Systems (NAPAS), which is now the National Disability Rights Network (NDRN). I learned about the definition of "developmental disability." It was first introduced in 1970 for certain disabilities acquired before age 18, and then further expanded in 1975 in the Developmentally Disabled Assistance and Bill of Rights Act (DD Act) which raised the age of onset to 22 and switched from a list of specific conditions to a more functional approach. I learned the acronyms of DD; P&A (protection and advocacy); PAIMI (protection and advocacy for individuals with mental illness); and PAIR (protection and advocacy for individual rights).

I found out that not only did the DD Act create the P&A groups, but also State Councils on Developmental Disabilities and University Centers for Excellence in Developmental Disabilities Education, Research and Service. It is quite an impressive structure. It struck me sitting at these NAPAS board meetings that although it was a well thought out structure, why did it focus only on people with the label of DD? It seemed to contradict the cross-disability philosophy that fueled the independent living movement and the disability rights movement as a whole. It also seemed to contradict a slogan self- advocates used: LABEL JARS, NOT PEOPLE!

I had participated in the protests to implement the rules of Section 504 of the Rehabilitation Act of 1973, which put into law the definition of "person with a disability" that includes people with the label of DD. Why the separation? This definition was the basis for the current definition in the Americans with Disabilities Act (ADA).

I then realized that this separation was bureaucratically designed in 1979 when the Department of Health, Education and Welfare split into two agencies: Department of Health and Human Services (HHS) and the Department of Education (DOE). The Administration on Developmental Disabilities was created at HHS and Independent Living (IL) went to the Rehabilitation Services Administration at DOE. These were decisions made by the advocates at the time. The ADA will be celebrating its 25th anniversary next year. Community integration, the philosophical foundation of the ADA, is something everyone in the disability community can agree on.

Though our rhetoric is of cross- disability, the reality is we are an extremely fragmented community, that has built our service delivery models for long-term services and supports (LTSS), based not on our functional needs, but on an arbitrary age of onset and governmental disability definitions. There is no debate on the fact that all people with disabilities don't need the same package of services.

Our community is not a fondue all melted together; we are more like a tossed salad made up distinct vegetables (no offense intended). However if you need an attendant to get out of bed, it doesn't matter if you were born with your disability, acquired it before age 22 or broke your neck at 50. If you need assistance with financial management or other decision- making tasks, does it really matter that you had a brain injury at 30, a stroke at 60 or were born with those needs?

If you have an "Intellectual Disability," why is it the government only recognizes it if you had it before age 22? How do mental health needs get integrated into the LTSS system?

We have built systems that have their own cultures. We speak different languages defining the same things. We have different program names, different packages of services, similar services with different names, different rates for workers doing the same tasks, different providers, different bureaucratic agencies, etc. It is not an easy discussion. There are many interest groups that have a stake in keeping the status quo. It is also a political minefield that we hate to traverse. I personally think we avoid this open discussion at our own peril.

Medicaid, the largest funder of LTSS, will be going through reforms over the next five to 10 years that none of us can predict. Medicaid managed care is growing. Whether we support or oppose it, we can't escape the reality that even some of the most progressive governors in the country are implementing Medicaid managed care. Congress seems unable to address difficult issues so it appears change, if it is to occur, must bubble up from the state level.

A start might be an Administration on People with Significant Disabilities within the Administration on Community Living. Another thought is to change the age of onset in the DD Act to under 60. As we celebrate the 25th Anniversary of the ADA let's not miss the opportunity to debate how our services and supports system can better align with the community integration philosophy of the ADA.

BOB KAFKA is a disability rights activist and co-founder of ADAPT of Texas. Through his work with ADAPT, Kafka helped shepherd the WE WILL RIDE victory for lifts on buses and the 1990 Americans with Disabilities
Act. ADAPT fights to release people from nursing homes and other institutions and works for more accessible communities including transportation, housing, public accommodations and governmental buildings and programs.