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Connections

Equity, Opportunity and Inclusion for People with Disabilities since 1975 Volume 37  Issue 4  Fall 2011

At the Intersection of Race and Disability: What Do We Know and What Do We Need to Do?

In This Issue Differences in the Occurrence of Developmental Disabilities Among Children  Page 8 Increasing CDC’s Impact on Health Equity by Reducing Health Disparities Among People with Disabilities  Page 13 Health Disparities Experienced by People with Disabilities by Race and Ethnicity  Page 21 Inequity to Equity: Healthy People, A Tool  Page 26 A Call to Action  Page 28

Book Review “i am intelligent” Page 29 2011 TASH Conference in Review Page 32


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TASH Connections  Fall 2011  www.tash.org


Connections Editor

Charles Dukes Editorial Committee

Deborah Taub Elizabeth Fullerton Linda Lengyl Pamela Lamar-Dukes 2011 TASH Board of Directors

Carol Quirk, President David L. Westling, Vice President, Chair, Membership Committee Diane Ryndak, Secretary Barbara Loescher, Ex Officio, Treasurer, Co-Chair, Diversity Committee Ralph Edwards, Ex Officio, Co-Chair, Diversity Committee Jean Trainor, Chair, Development Committee Shirley Rodriguez, Ex Officio, Chair, Chapter Leadership Committee Michael Callahan, Chair, Employment Committee Mary Morningstar, Chair, Education Committee Gail Fanjoy, Chair, Community Living Committee Sharon Lohrmann, Chair, Conference and Training Committees Lisa Mills, Ex Officio, Co-Chair, Public Policy Committee Curtina Moreland-Young Ari Ne’eman Betty Williams Micah Fialka-Feldman Bill Smith Lewis Jackson Martin Agran, Ex Officio Charles Dukes, Ex Officio SungHo Park, Ex Officio Pat Amos, Ex Officio

Volume 37  Issue 4  Fall 2011

Table of Contents 4 Letters from TASH

Articles from Our Contributors 8 Differences in the Occurrence of Developmental Disabilities Among Children: Marshalyn Yeargin-Allsopp, MD, and C. Leah Franklin, MPH 13 Increasing CDC’s Impact on Health Equity by Reducing Health Disparities Among People with Disabilities, Leandris C. Liburb, PhD, MPH 21 Health Disparities Experienced by People with Disabilities by Race and Ethnicity: Double Jeopardy, Vincent A. Campbell, PhD 26 Inequity to Equity: Healthy People, A Tool, Lisa Bundara Sinclair, MPH 28 A Call to Action, Ralph W. Edwards, MPH, MPA and Pamela Lamar-Dukes, M.Ed, Former Director of the TASH People of Color Project 29 Special Feature: Book Review “i am intelligent” by Peyton Goddard and Dianne Goddard, Reviewed by Pat Amos 32 Special Feature: 2011 TASH Conference in Review 43 Association News

Contact Us

1001 Connecticut Ave., NW, Suite 235 Washington, DC 20036 Phone: (202) 540-9020  Fax: (202) 540-9019 info@tash.org  www.tash.org Barbara Trader, Executive Director btrader@tash.org Jonathan Riethmaier, Advocacy Communications Manager jriethmaier@tash.org Haley Kimmet, Program Manager hkimmet@tash.org To request an alternative format of TASH Connections call (202) 540-9020. Copyright© TASH 2011. No reprints without permission. Permission requests can be faxed to (202) 540-9019.

TASH Connections  Fall 2011  www.tash.org

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Letter from the President, David Westling As a white person growing up in the South in the 1950s and 60s, I had a close-up view of the Civil Rights movement. As I watched, I went through an emotional and mental process that started with worry and concern, moved on to confusion, but ended with cautious optimism. Certainly my view was different from many of my white friends and relatives, and it was definitely different from that experienced by many African Americans. Recently I have been reading The Help, by Kathryn Stockett, it has reawakened me to the “bad old” days of an apartheid America. But it rekindled my thinking about race in America. While we cannot deny that we have moved well past the 50s and 60s, it is clear that we have not made sufficient progress, as the reports in this issue of Connections indicate. There are blatant disparities in disabilities, health issues, and health care provisions for people of color. If you are a child born to a mother of color or living in poverty, your chances of having a disability are higher than if you are born into a white, middle-class family. Then, as you grow older, your access to healthcare is less likely. This reflects a very uneven playing field, one the country cannot afford. Our latest success down the road of progress, the Affordable Healthcare Act, will address some of these inequities, and we should be thankful for that, but also realize there is much work to do.

In their letter, the Guest Editors ask, “How has TASH (its members, board, staff, constituents) addressed disparities experienced by people of color?” As a member of the Board, I can say that while we have taken some steps, we have not done enough. Our outreach to and involvement of people of color is part of our National Agenda, but we need to continue to focus on our efforts to make TASH an advocacy organization that is as welcoming to and as supportive of people of color as it is to others. Our outreach needs to improve and be strengthened, and our welcome mat needs to be laid out in plain view. But we need to do still more. So the question is, what should we—as an organization that promotes “equity, opportunity, and inclusion”—do to move our progress down the road? And what should we—as individual members of TASH—do to ensure more fairness for people of color with disabilities?

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I think simply being aware of the data and information contained in this issue of Connections is an important first step. But as an organization, I believe TASH needs to join forces with traditional civil rights organizations to strongly advocate David L. Westling, Ed.D. for the rights of people of color President, TASH Board with disabilities. I am afraid that of Directors this population slips through the cracks both in these traditional civil rights organizations and in disability advocacy organizations like TASH. So a union of these groups, joining forces on this specific topic, is essential.

As individual TASH members we can take several actions to move this process forward. For example, we can:  Reach out as individuals to persons of color to invite them

into the TASH family  Participate in organizations and attend the conferences where

issues of race and ethnicity are dominant themes  Speak up for the children of color who are left behind in the

segregated schools and classrooms as much as we speak up for our own children, and  Let our lawmakers and policy-makers in administrative

units know that people of color experience disability with a disproportionate harshness. Through both our organizational efforts and our individual efforts, I remain hopeful that we can accept the challenge raise by this issue of Connections and offer a better answer to the question raised by this issues’ Guest Editors.

David L. Westling, Ed.D. President, TASH Board of Directors

TASH Connections  Fall 2011  www.tash.org


A Letter from Our Executive Director: Barb Trader Thanks to letters from Ralph Edwards, this issue’s Guest Editor, and Dave Westling, TASH’s President, Connections readers have a background on the related issues of disparity, diversity and cultural competency and TASH’s work in these areas over the past several years. Dave has also provided a solid list of questions we can ask ourselves to meet the challenge of Ralph’s Call to Action. I offer a menu of “to-dos” members and chapter leaders can consider as you determine your individual or organizational responses to the disparities people of diverse backgrounds face. I’ve made attempts to also include resources to support your actions, and invite readers to suggest more by contacting me at the e-mail address below. 1. Learn more about cultural and linguistic competency. The National Center for Cultural Competency at Georgetown University is a great place to start. Sessions on cultural competency taking place at the 2012 TASH Conference can be found here. 2. Think about your own unique cultural background and develop some insight about how it might influence your work habits, your relationships, communication style, decisionmaking, etc. (For example, I am white, middle class, with roots in the rural upper Midwest, raised in a protestant church). Acknowledge how your cultural identity influences your understanding of and interactions with people of diverse cultures.

possible roles, please e-mail me at btrader@tash.org. 5. Assess your agency’s linguistic and cultural competency by completing the Cultural and Linguistic Competency Self Assessment for Disability Barbara Trader, Organizations. This is Executive Director of a tool TASH developed TASH in collaboration with Georgetown University. If this tool doesn’t specifically meet your needs, visit Georgetown’s NCCC website for a broader range of self-assessment tools. 6. Involve individuals and families of diverse backgrounds in disability advocacy by facilitating the exploration of how culture influences advocacy. TASH’s tools on family advocacy training from a cultural lens are available in English, Spanish and Mandarin at TASH.org. 7. Consider diversity and culture in research design. TASH’s journal, Research and Practice for Persons with Severe Disabilities, provides insight and perspective on this topic, Volume 34 issue 3-4. 8. Let us know! If you have questions, ideas, insights as you explore what you can do to confront disparities experienced by our diverse sisters and brothers. We welcome your efforts and insight.

3. Use TASH’s Resolution on Diversity and Cultural and Linguistic Competency as a framework to guide your thinking and advocate for increased focused on these issues locally.

Warmly,

4. Reach out to colleagues, friends and people you support who are from diverse backgrounds to become involved in TASH, perhaps in a leadership role. Membership is available by visiting TASH.org . For more specific understanding of

Barb Trader btrader@tash.org

TASH Connections  Fall 2011  www.tash.org

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A Letter from Our Editor: Charles Dukes In 1994, Cornel West published his book, Race Matters. The title inspired quite a bit of discussion, as the seemingly simple phrase—race matters—could imply the importance of race or the importance of matters relating to race. In either case, race remains a significant issue in the United States. For some, race has too much of an emphasis and it is time to leave these discussions behind and “move on.” While for others, race is still and most likely will remain a prominent issue that deserves the utmost attention. This opening statement is not intended to make the case for either side, but rather to point out the interesting intersection between race and disability. Race is such a continuous issue that adding any other demographic variable to the conversation makes for a fundamentally different conversation. For example, are the experiences of people of color with disabilities qualitatively different than others with disabilities? Do support needs somehow override the influence of race and what exactly is the influence of race? These questions are not easily answered and there are no clear answers in sight that might satisfy the greatest number of people. But, difficult issues are not to be ignored, only pursued with greater diligence.

In this issue of TASH Connections, the guest editors have brought together a fine collection of scholars from the Center for Disease Control and Prevention (CDC) in Atlanta, Georgia. These scholars present a Charles Dukes, Editor, number of different perspectives on TASH Connections the intersection of race and disability. The intent here is to further the conversation about the possible impact of race, ethnicity, and disability on the human experience. There is much to ponder from this issue. As always, readers will find updates on TASH activities as well as a review of an interesting new book. Enjoy the information and use it where possible.

Charles Dukes Editor TASH Connections

A Letter from Our Guest Editors: Ralph Edwards & Pamela Lamar-Dukes

Towards Equity, Equality and Improved Outcomes The question is simple: What is TASH? How are we distinct from the “average” transformative, trailblazing advocacy organization? For several years, data on the disparate experiences of people of color with severe disabilities has been presented to TASH members, Board, conferees as well as to the Boards of key national disability organizations including the Arc, American Association on Intellectual Disability, National Council for Independent Living, Autism Society of America, and National Down Syndrome Congress. The 2004, Volume 30, November/ December issue of TASH Connections, “Race and Disability:

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Still Separate, Still Unequal”, provided data from the Centers for Disease Control and Prevention (CDC) on the higher risks faced by individuals of color with intellectual and developmental disabilities. In the current issue, a noted quartet of CDC researchers and policy-makers provide new and updated data. These scholars graciously presented these data at the December 2011 TASH annual conference. The contributors have contextualized these data within

Guest Editors Ralph Edwards (top) and Pamela Lamar-Dukes (bottom)

TASH Connections  Fall 2011  www.tash.org


A Letter from Our Guest Editors continued from page 6

the health disparities paradigm. The analysis presented here offers significant implications for TASH and the disability community in regards to data collection, analysis, research, and mobilization to reduce disparities, as well as inspiration for a renewed commitment to equity and social justice. TASH is dedicated to equity and full inclusion for individuals with significant disabilities. The image of an individual with significant disabilities most often projected is that of someone who is: medically fragile and/or has significant behavioral problems; and least likely to be welcomed into the classroom, workplace, or community. Disability, health, and socio-economic data and decades of sociological research suggest that people of color with significant disabilities are “de facto” members of this group. Data from multiple sources and over time indicate higher incidence and prevalence, later access, fewer services and harsher outcomes in general for people of color. Although numerous variables contribute, race/ethnicity plays a decisive role in these outcomes. In fact, the disparities experienced by people of color with disabilities surpass those of people of color without disabilities as well as those individuals with disabilities. Without a doubt there is a relentlessly compounding juncture of disability and race/ethnicity.

This “must read” issue of TASH Connections contains well-informed perspectives on the impact that the race/ethnicity and disability has on society and the individual. Readers will get the overarching systemic implications, the specifics on Intellectual Disability/ Developmental Disability, additional data on disparities, a prevention strategy, and a Call to Action. Moreover, this issue identifies the problems and specific strategies that must be implemented if these issues are to be ameliorated. Finally, the contributors direct the readers’ attention to the role of the advocate and advocacy organizations in addressing the issues. Dr. Leandris C. Liburd, CDC’s Director of Minority Health and Health Equity, provides a description and background of disparities and CDC’s policies, programs and activities to engage communities, implement strategies to address disparate outcomes, and a focal point for a public health agenda that addresses the preventable disparate outcomes experienced by people of color and other demographic groups. In 1984, CDC began its Metropolitan Atlanta Developmental Disability Study (MADDS) to determine the prevalence of intellectual disability, cerebral palsy, legal blindness, hearing loss, and epilepsy among children who were 10 years of age. In 1991, its success lead to the establishment

TASH Connections  Fall 2011  www.tash.org

of the Metropolitan Atlanta Developmental Disabilities Surveillance Program (MADDSP) and in 1996, Autism Spectrum Disorders was added to the disabilities being monitored. Dr. Marshalyn Yeargin-Allsopp, Medical Epidemiologist, shares MADDSP findings on developmental disabilities and on Autism. Dr. Vincent Campbell, Health Scientist, Division of Human Development and Disability shares information on employment and health disparities experienced by many people of color with disabilities. Lisa Sinclair, CDC Health Science Policy Analyst, describes the potential of Healthy People 2020 to inform and provide benchmarks for prevention goals. Trusting that coupling TASH values and historical commitment to equity and inclusion with well documented CDC data will lead to action, and appropriately, this issue concludes with a “Call to Action”. After receiving more than $500,000 directly related to its involvement with people of color, it is necessary to ask: How has TASH (its members, board, staff, constituents) addressed disparities experienced by people of color? Has TASH improved its cultural competency skills? What has TASH done to lead the disability community on these issues? How have conditions for people of color with disabilities changed? How has engagement of people of color in TASH increased? What is the TASH commitment to this effort and how is it demonstrated? The American social history is filled with stories of organizations being enriched by their association with people of color issues, often presented as advocacy and leadership. There is a strong association of organizational involvement being linked with available funding. And the activities and services provided are consistent primarily with the organization’s interest rather than the needs and preferences of communities of color. With TASH, several of the key folks of color involved in TASH have expressed reservations about the depth, understanding, and continuity of commitment of TASH to people of color concerns. TASH members, board and staff are encouraged to demonstrate through words and deeds, policy and practices the organization’s commitment and leadership regarding issues important to people of color.

In the end, it is hoped that you will be better informed about these issues and persuaded to address a simple question: What is TASH? Ralph W. Edwards, MPH, MPA, is a former Chair of the TASH Executive Committee and the TASH Diversity/Cultural Competency Committee. Pamela Lamar-Dukes, M.Ed, was Coordinator of the TASH People of Color Project.

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Articles from Our Contributors Differences in the Occurrence of Developmental Disabilities among Children: Findings from CDC’s Ongoing Monitoring System By Marshalyn Yeargin-Allsopp, MD and C. Leah Franklin, MPH

D

evelopmental disabilities are common among children in the United States. About one in six children in the United States had a developmental disability during the period 2006–2008 according to recent estimates (Boyle et al., 2011). However, the occurrence of developmental disabilities is not equal among all groups of children. This brief article (1) provides an overview of the Centers for Disease Control and Prevention’s (CDC) developmental disability monitoring system, (2) uses CDC’s monitoring data to highlight differences in the occurrence of selected developmental disabilities among children, and (3) discusses how CDC is addressing developmental disabilities from a public health perspective. 1

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Author Marshalyn Yeargin-Allsopp, MD

CDC has been monitoring select developmental disabilities since the 1980s. In 1979, CDC was presented with a question: How many children have a developmental disability? To address this question, CDC initiated the Metropolitan Atlanta Developmental Disabilities Study (MADDS) in 1984. MADDS determined how common intellectual disability (ID), cerebral palsy (CP), hearing loss, vision impairment, and epilepsy were among school-aged children in five counties in the metropolitan Atlanta area during the period 1984–1991. The resulting data are known collectively as prevalence estimates1. Because children with developmental disabilities are identified by and receive services from various health, social service, and education systems, MADDS used a multiple-source case identification method. This unique method, involving review of multiple records at multiple sources in the community, made it possible to confirm specific conditions and to classify subtypes of disabilities. In addition, this method was found to be more cost-effective than conducting medical and psychological assessments on large samples of children (YearginAllsopp et al., 1992).

Prevalence is a scientific term describing the number of individuals with a disease or condition among a defined group of people at a specific time period.

TASH Connections  Fall 2011  www.tash.org


Articles from our Contributors Differences in the Occurrence of Developmental Disabilities among Children continued from page 8

Based on the success of MADDS, CDC launched the Metropolitan Atlanta Developmental Disabilities Surveillance Program (MADDSP) in 1991. Initially, MADDSP monitored the prevalence of intellectual disability, cerebral palsy, vision impairment, and hearing loss. Due to public concern over unexpectedly high rates of autism spectrum disorders (ASDs) in the mid-1990s, that condition was added in 1996. To determine the number of children in metropolitan Atlanta with any of these five developmental disabilities, MADDSP uses the recordsbased monitoring method developed during the MADDS study. This method involves reviewing records at multiple health and education sources where children with developmental disabilities might receive services. In addition to guiding research and helping communities plan for services, MADDSP data has supported the initiation of prevention programs. For example, MADDSP served as the basis for universal newborn hearing screening in the United States, and over 95% of all newborns are now screened for hearing loss in every state (CDC, 1997; CDC, 2012). This pioneering monitoring system continues to contribute to the field of the developmental disabilities and serve as a model for other surveillance programs. The Children’s Health Act of 2000 provided a mandate for CDC to expand monitoring and epidemiologic research of ASDs and other developmental disabilities in the United States. The Autism and Developmental Disabilities Monitoring (ADDM) Network is a group of programs funded by CDC to determine the number of children with ASDs in the United States. Currently, there are 12 ADDM Network sites. Each site collects data using the same monitoring methods, which are modeled after those used by MADDSP. In addition to monitoring ASDs among 8-year-olds, seven sites also monitor ID; four sites monitor CP; and six sites monitor ASDs among 4-year-olds. This ongoing monitoring of large, diverse populations allows the ADDM Network to track changes in the prevalence of ASDs and other developmental disabilities and the characteristics of children with these conditions, such as the average age of diagnosis and differences in community identification. These data provide a clearer picture of the very real effects of ASDs and other developmental disabilities on families and communities. MADDSP and ADDM Network data have shown that differences exist in the occurrence of developmental

disabilities among children2. This article explores differences by sex, socioeconomic status, and race or ethnicity for three developmental disabilities: ID, CP, and ASD. According to MADDSP data from 2002-2006, the prevalence of ID in metropolitan Atlanta is 11.7 per 1,000 8-year-old children, or 1 in 85 (Obi et al., 2011). Boys are more likely than girls to have ID (Obi et al., 2011; Drews et al., 1995). The increased prevalence of ID among males might be due in part to X-linked conditions such as fragile X syndrome (Bhasin et al., 2006). Some studies have suggested that ID by itself also is more common among children of lower socioeconomic status (Decoufle & Boyle, 1995; Yeargin-Allsopp et al., 1995). Socioeconomic status as a risk factor for ID can vary with the presence of other neurological conditions (Drews et al., 1995). Lastly, Black3 children have a slightly higher prevalence of ID (Obi et al., 2011; Mandell et al., 2009). One study found that the higher risk of mild ID among Black children could be accounted for partially by sex, maternal age at delivery, birth order, maternal education, and economic status (Yeargin-Allsopp et al., 1995). Further studies are needed to explore whether the reported increased prevalence of ID among Black children is a true difference or can be explained by other factors. According to ADDM Network data from 2006, the overall prevalence of CP among multiple communities in the United States is 3.3 per 1,000 8-year-old children, or 1 in 303 (Kirby et al., 2011). CP, like ID, is slightly more common among boys than among girls (Arneson et al., 2009; Yeargin-Allsopp et al., 2008). In fact, boys are 1.4 times more likely than girls to have CP (Arneson et al., 2009; Yeargin-Allsopp et al., 2008). Again, lower socioeconomic status seems to be related to a higher risk of CP, and one study found that children living in low and middle income neighborhoods were more likely to have CP (Yeargin-Allsopp et al., 2008). The prevalence of CP is highest among Black children and lowest among Hispanic children (Yeargin-Allsopp et al., 2008). The lower prevalence among Hispanic children might reflect cultural and linguistic issues that limit access to health and social services (Kirby et al., 2011; Yeargin-Allsopp et al., 2008). Racial differences in level of daily functioning also have been reported; a recent study found that Black children with CP were 1.7 times more likely to have limited or no walking ability compared with White children with CP (Maenner et al., 2012). More research is needed to determine

2

All information and statistics reported in this article are based on data from MADDS, MADDSP, and the ADDM.

3

Data was not collected using race and ethnicity categories defined by the Office of Management and Budget (OMB).

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Articles from our Contributors Differences in the Occurrence of Developmental Disabilities among Children continued from page 9

whether these racial and ethnic differences can be accounted for by other factors, such as variations in income, access to services, and cultural and language issues (Maenner et al., 2012; Yeargin-Allsopp et al., 2008). According to ADDM Network data from 2008, the estimated prevalence of ASDs is 11.3 per 1,000 8-year-old children, or 1 in 88 (CDC, 2012). ASDs are more common among boys than girls, with boys being almost 5 times more likely to have ASDs than girls (CDC, 2012). Boys also are more likely than girls to have a documented ASD classification in their records (Giarelli et al., 2010). This increased community identification of ASDs among males might be affected by the cultural perspective of parents and providers and by what is considered “normal” behavior for each gender. Although not the case with ID and CP, higher socioeconomic status is related to a higher risk of having an ASD (Shattuck et al., 2009). In one study of children from metropolitan Atlanta, higher maternal education and residence in higher median family income neighborhoods were significantly associated with ASD (Bhasin & Schendel, 2007). Another study using data across all ADDM Network sites found that children with ASDs were less likely to live in neighborhoods classified as poverty areas (Durkin et al., 2010). In addition, older parents are more likely to have a child with an ASD (Durkin et al., 2008). One study found that the first-born children of mothers who were aged 35 years or older and fathers who were aged 40 years or older were three times more likely to have ASDs compared to children with younger parents (Durkin et al., 2008). Although the prevalence of ASDs has increased over time across all racial and ethnic groups, ASDs continue to be more common among White children (Jarquin et al., 2011; CDC, 2012; Mandell et al., 2009).

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Black and Hispanic children are also less likely to have a documented ASD classification in their records among children identified as having ASDs (Mandell et al., 2009; Shattuck et al., 2009). Similar to CP, racial differences also exist in the severity

TASH Connections  Fall 2011  www.tash.org


Articles from our Contributors Differences in the Occurrence of Developmental Disabilities among Children continued from page 10

of diagnosis. For example, Black children are more likely to be identified with autistic disorder, while White children are more likely to be identified with Asperger’s Syndrome (Jarquin et al., 2011). MADDSP and ADDM Network data have shown health differences exist in the occurrence of developmental disabilities among children. These data have shown that boys, children of lower socioeconomic status, and Black children seem to be at higher risk for ID and CP. However, ASD prevalence is consistently higher among children who are male, White, and of higher socioeconomic status. Other CDC data on developmental disabilities support MADDSP and ADDM Network findings. A recent study published by Boyle et al. (2011) on the prevalence of developmental disabilities among children 3–17 years of age found that being male, insured by Medicaid, and from a family with an income below the federal poverty level were associated with a higher prevalence of any developmental disability. The study also found that being Hispanic was associated with a lower prevalence of having several disorders, including attention-deficit/ hyperactivity disorder and learning disabilities (Boyle et al., 2011). More research is needed to examine the effects of other factors, such as access to services, health insurance coverage, and cultural barriers, on these differences. CDC is part of a larger group of public and private organizations working to better understand developmental disabilities. We at CDC have framed our efforts employing a public health approach, which incorporates three essential elements— surveillance, or disease monitoring; public health research to identify modifiable risk factors; and prevention research and programs. Currently, CDC is undertaking efforts to study how common developmental disabilities are, who is more likely to have them, and whether their occurrence is changing over time. CDC also is working to identify factors that might put children at risk for developmental disabilities and to improve identification of developmental delays so children and families can get the services and support they need as early as possible.

Determining How Many People Have Developmental Disabilities By monitoring the number of children with developmental disabilities over time, we can find out whether the number is rising, dropping, or staying the same. We also can compare the number of children with developmental disabilities in

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different parts of the country and look at the different traits or features of children with developmental disabilities, as well as their demographic, socioeconomic, and birth and maternal characteristics. This information can help us look for risk factors and possible causes for developmental disabilities and can better inform prevention programs and policy development. These data also can help communities to plan for services and respond to the needs of families.

Understanding Risk Factors and Causes For some developmental disabilities, we know the risk factors and causes. For many others, we do not. Research can help us fill in these gaps. Understanding the factors that might place a child at greater risk for developmental disabilities will help us learn more about the causes of developmental disabilities, shape prevention efforts, and develop effective treatments. CDC currently is funding and collaborating on the Study to Explore Early Development, (SEED), one of the largest U.S. studies to help identify factors that might put children at risk for ASDs and other developmental disabilities. We also are exploring risk factors for and investigating causes of developmental disabilities through national and international collaborations.

Recognizing the Early Signs of Developmental Disabilities We naturally think of a child’s growth as height and weight, but from birth to 5 years of age a child should reach milestones in how he or she plays, learns, speaks, acts, and moves. A delay in any of these areas could be a sign of a developmental disability. Early identification and intervention can have a significant effect on a child’s ability to learn new skills, as well as reduce the need for costly interventions over time. CDC’s “Learn the Signs. Act Early.” health education campaign promotes awareness among parents, health professionals, and child care providers about healthy developmental milestones during early childhood, the importance of tracking each child’s development, and the importance of acting early if there are concerns. CDC offers free online resources, including checklists of developmental milestones, at www.cdc.gov/ActEarly. CDC also works with state and national partners to improve early childhood programs and systems in each state so children and their families can get the services and support they need.

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Final Thoughts The information from MADDSP and the ADDM Network highlighting differences in the occurrence of developmental disabilities among children is important for researchers, policymakers, service providers, families, and communities. CDC’s will continue to monitor developmental disabilities

through MADDSP and the ADDM Network in order to provide essential data on developmental disabilities, including the disproportionate burden among certain groups of children; to work with our partners to accelerate our understanding of the risk factors and causes of developmental disabilities; and to improve early identification in hopes that all children can reach their full potential.

References Arneson, C.L., Durkin, M.S., Benedict, R.E., Kirby, R.S., Yeargin-Allsopp. M., Van Naarden Braun, K., et al. (2009). Prevalence of cerebral palsy: Autism and Developmental disabilities Monitoring Network, three sites United States 2004. Disability and Health Journal, 2, 45-48. Boyle, C.A., Boulet, S., Schieve, L., Cohen, R.A., Blumberg, S.J., Yeargin-Allsopp, M., Visser, S., & Kogan, M.D. (2011). Trends in the Prevalence of Developmental Disabilities in US Children, 1997–2008. Pediatrics, 127(6), 1034-1042. Centers for Disease Control and Prevention. Prevalence of the Autism Spectrum Disorders – Autism and Developmental Disabilities Monitoring Network, 2008. MMWR Morbidity and Mortality Weekly Report 2012;March 29;61(SS3), 1-19. Centers for Disease Control and Prevention. Prevalence of the Autism Spectrum Disorders – Autism and Developmental Disabilities Monitoring Network, 2006. MMWR Morbidity and Mortality Weekly Report 2009;Dec 18;58(SS10), 1-20. Centers for Disease Control and Prevention. Serious hearing impairment among children aged 310 years—Atlanta, Georgia, 1991-1993. MMWR Morbidity and Mortality Weekly Report 1997 Nov 14;46(SS45), 1073-1076. Centers for Disease Control and Prevention. Public health cycle. Available at: http://www.cdc.gov/ncbddd/hearingloss/publichealth.html. Accessibility verified January 18, 2012. Decoufle, P. & Boyle, C.A. (1995). The relationship between maternal education and mental retardation in 10-year-old children. Annals of Epidemiology, 5(5), 347-353. Drews, C.D., Yeargin-Allsopp, M., Decoufle, P., & Murphy, C.C. (1995). Variation in the influence of selected sociodemographic risk factors for mental retardation. American Journal of Public Health, 85(3), 329-334. Durkin, M.S., Maenner, M.J., Meaney, F.J., Levy, S.E., DiGuiseppi, C., Nicholas, J.S., Kirby, R.S., Pinto-Martin, J.A., & Schieve, L.A. (2010). Socioeconomic inequality in the prevalence of autism spectrum disorder: Evidence from a US crosssectional study. PLoS One, 5(7), 1-8. Durkin, M.S., Maenner, M.J., Newchaffer, C.J., Lee, L., Cunniff, C.M., Daniels, J.L., Kirby, R.S., Leavitt, L., Miller, L., Zahorodny, W., & Schieve, L.A. (2008). Advanced parental age and the risk of autism spectrum disorder. American Journal of Epidemiology, 168(11), 1268-1276. Jarquin, V.G., Wiggins, L., Schieve, L.A., & Van Naarden-Braun, K. (2011). Racial disparities in community identification of autism spectrum disorders over time; Metropolitan Atlanta, Georgia, 2000-2006. Journal of Developmental & Behavioral Pediatrics, 32(3), 179-187. Kirby R.S., Wingate, M.S., Van Naarden Braun, K., Doernberg, N., Arneson, C.L., Benedict, R.E., Mulvihill, B., Durkin, M.S., Fitzgerald, R.T., Maenner, M.J., Patz, J.A., & Yeargin-Allsopp, M. (2011). Prevalence and functioning of children with cerebral palsy in four areas of the United States in 2006: A report from the ASD and Developmental Disabilities Network. Research in Developmental Disabilities, 32, 462-469. Maenner MJ, Benedict, RE, Arneson, CL, Yeargin-Allsopp M, Wingate, MS, Kirby, RS, Van Naarden Braun, K, & Durkin, MS. Children with cerebral palsy: Racial disparities in functional limitations. Epidemiology. 2011 [Epub ahead of print] Mandell, D.S., Wiggins, L., Carpenter, L., Daniels, J., DiGuiseppi, C., Durkin, M., Giarelli, E., Morrier, M., Nicholas, J., Pinto-Martin, J., Shattuck, P., Thomas, K.C., Yeargin-Allsopp, M., & Kirby, R. (2009). Racial/Ethnic Disparities in the Identification of Children with Autism Spectrum Disorders. American Journal of Public Health, 99(3), 493-498.

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Articles from our Contributors Differences in the Occurrence of Developmental Disabilities among Children continued from page 12 Obi, U., Van Naarden Braun, K., Baio, J., Drews Botsch, C., Devine, O., & Yeargin-Allsopp, M. (2011). Effect of incorporating adaptive functioning scores on the prevalence of intellectual disability. American Journal of Intellectual and Developmental Disabilities, 166(5), 360-370. Shattuck, P., Durkin, M., Maenner, M., Newschaffer, C., Mandell, D.S., Wiggins, L.D., Lee, L., Rice, C., Giarelli, E., Kirby, R., Baio, J., Pinto-Martin, J., & Cuniff, C. (2007). Timing of identification among children with an autism spectrum disorder: Findings from a population-based surveillance Study. Journal of the American Academy of Child and Adolescent Psychiatry, 48, 474-483. Williams, L.O. & Decoufle, P. (1999). Is maternal age a risk factor for mental retardation among children? American Journal of Epidemiology, 149(9), 814-823. Yeargin-Allsopp, M., Van Naarden Braun, K., Doernberg, N.S., Benedict, R.E., Kirby, R.S., & Durkin, M.S. (2008). Prevalence of cerebral palsy in 8-year-old children in three areas of the United States in 2002: A multisite collaboration. Pediatrics, 121(3), 547-554. Yeargin-Allsopp, M., Drews, C., Decoufle, P., & Murphy, C. (1995). Mild mental retardation in black and white children in metropolitan Atlanta: A case-control study. American Journal of Public Health, 85(3), 324-328. Yeargin-Allsopp, M., Murphy, C.C., Oakley, G.P., & Sikes, R.K. (1992). A multiple-source method for studying the prevalence of developmental disabilities in children: the Metropolitan Atlanta Developmental Disabilities Study. Pediatrics, 89(4), 624-630.

Increasing CDC’s Impact on Health Equity by Reducing Health Disparities among people with Disabilities By Leandris C. Liburd, PhD, MPH4

The National Legacy of Racial and Ethnic Health Disparities

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ne of the biggest remaining national and global challenges for the Centers for Disease Control and Prevention (CDC), the United States, and the world community is eliminating longstanding and pervasive health disparities. Disparities related to race/ethnicity, socioeconomic status, and other important demographic dimensions are observed across clinical conditions (e.g., diabetes, heart disease, cancer), across many care settings (e.g., primary care, dental care, mental health care, substance abuse treatment, emergency

TASH Connections  Fall 2011  www.tash.org

rooms, hospitals, and Author Leandris C. nursing homes), and Liburd, PhD, MPH4 across population groups. And, disparities are observed within many subpopulations including women, children, older persons, residents of rural areas, individuals with special care needs, and the focus of TASH—persons with severe disabilities. Health problems, such as heart disease, asthma, obesity, diabetes, HIV/AIDS, diabetes, Viral Hepatitis B and C, infant mortality, and violence, disproportionately affect certain populations. Coronary heart disease and stroke, for example, account for the largest proportion of inequality in life expectancy between whites and blacks, despite the existence of low-cost, highly effective

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preventive treatment. In 2006, black men and women had the highest death rate for stroke, and these deaths occurred at younger ages. While African Americans represent approximately 14% of the U.S. population, they account for almost half of the people living with HIV in the U.S. A full discussion of health disparities experienced by racial and ethnic populations in the U.S. is beyond the scope of this article, but is available in the CDC Health Disparities and inequalities Report—United States, 2011. (MMWR Supplement, January 14, 2011, Vol. 60, pg. 1-116.) These disparities are observed in almost all aspects of health care, including all dimensions of quality of care (e.g., effectiveness, patient safety & timeliness), access to care (getting into the system & getting care within the system), and types of care (preventive, acute & chronic). Racial and ethnic minorities are more likely to lack insurance coverage and a usual source of care, such as a primary care provider. In addition, low-income neighborhoods, especially those with a large proportion of individuals identified as racial or ethnic minorities, are less likely to have access to recreational facilities and full-service grocery stores and more likely to have higher concentrations of retail outlets for tobacco, alcohol, and fast foods. Such disparities in the built environments are linked to high rates of violence, obesity, and diabetes. Low-income and minority populations are at increased risk of being exposed to pollution. As a result, they face a higher burden of asthma and a greater risk of delivering an infant with low birth weight. America benefits when everyone has the opportunity to live a healthy, productive life. All individuals, regardless of race, ethnicity, religion, socioeconomic status, age, mental health status, cognitive, sensory, or physical disability, sexual orientation or gender identity, geographic location, or other characteristics historically linked to discrimination or exclusion, should be supported by health promoting social environments and efforts that make healthy choices easy and affordable. Reducing these disparities in health will give everyone a chance to live a healthy life, support the national economy, and improve the quality of life for all Americans. CDC’s Office of Minority Health and Health Equity exists to accelerate the work of CDC and its partners in improving health by eliminating health disparities, promoting conditions conducive to health, and achieving health equity.

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CDC’s Office of Minority Health and Health Equity The Centers for Disease Control and Prevention first established the Office of Minority Health in the late summer of 1988 after the release of the 1985 Secretary’s Task Force Report on Black and Minority Health. The purpose of the Office then and now is to provide leadership for CDC, its partners, and the public in reducing health disparities and achieving health equity. When we speak of health disparities, we are referring to differences in health outcomes and their determinants between segments of the population, as defined by social, demographic, environmental, and geographic attributes (Carter-Pokras and Baquet, 2002). Health equity—which is part of CDC’s vision, is attainment of the highest level of health for all people. Achieving health equity requires valuing everyone equally with focused and ongoing societal efforts to address avoidable inequalities, historical and contemporary injustices, and the elimination of health and healthcare disparities. The work of the Office of Minority Health and Health Equity (OMHHE) is guided by 6 pillars of public health practice and research—Leadership, Science, Partnerships, Accountability, Workforce, and Culture. In brief, the leadership provided by the Office is intended to insure that efforts to reduce health disparities remain both in the mainstream and at the forefront of public health. As community awareness, policy, systems, and environmental changes strategies are implemented, how will we know our programs, policies, and environmental change strategies are taking us in the intended direction? Understanding the root causes of health disparities and establishing the evidence base for what works to reduce these disparities is a key goal of the science, research, and data analyses conducted by the Office of Minority Health and Health Equity. Both individual and societal factors interact in complex ways to cause differences in health outcomes. Therefore, CDC and the public health community must work in partnerships with multiple sectors of society to reduce health disparities and achieve health equity. Having good data, productive partnerships, and effective public health approaches contribute to better accountability of CDC-supported programs for the public and policymakers. A well-trained and diverse workforce is the cornerstone of a successful program to reduce health disparities. The Office of

Director, Office of Minority Health and Health Equity, Centers for Disease Control and Prevention, Atlanta, GA

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Minority Health and Health Equity is committed to promoting the need for greater representation of racial and ethnic minorities in public health, and the development of training programs to build expertise within the existing public health workforce. This expertise must also include expertise in working with people with disabilities, their families, and social networks. Lastly, we want to foster a public health model for reducing health disparities that acknowledges the importance of culture—as inclusive of, but a broader construct than cultural competency. In addition to our commitment to achieving cultural and linguistic competency within the public health workforce, it is necessary that we also understand more fully how health disparities are rooted in a community’s historical experience in this country. Even as we seek to understand the cultural backgrounds of the peoples representing the growing diversity of our nation, we must also learn what it means to live, work, and play in this society if you have a disability. With this knowledge, we can be more effective in promoting healthy lifestyles, accessible residential communities, greater equity in employment patterns, civic engagement, and other positive social and cultural norms.

OMHHE is working across the agency to foster a shared vision for reducing health disparities through greater communication and collaboration with our centers, institute and offices (CIOs) whose programmatic work is central to our ability to achieve health equity in this country.

Disabilities and Health Disparities Recent data from the U.S. Census Bureau estimates that 36 million people have a disability.2 When we break this down by age, we find that 5% of children 5 to 17 report having a disability, 10% of people 18 to 64 years of age report having a disability, and 37% of adults age 65 and other report having a disability. These disabilities represent 4 types: serious difficulty walking or climbing stairs, serious difficulty concentrating, remembering, or making decisions, deafness or serious hearing difficulties, and blindness or serious vision difficulty. More than 19 million people report serious difficulty walking or climbing stairs, followed by over 13 million people reporting serious difficulty concentrating, remembering, or making decisions. Just over 10 million people report being deaf or having serious difficulty with hearing and an estimated 6.5 million people report blindness or serious difficulty with their vision. When we examine disability by race and ethnicity, and disability here is defined as difficulty with at least 1 basic action, non-Hispanic Blacks and Blacks report a higher prevalence.

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The estimate of 36 million people is based on 6 questions in the 2008-2010 American Community Survey and refers to deafness or serious difficulty hearing; blindness or serious difficulty seeing, even with glasses; serious difficulty concentrating, remembering, or making decisions; difficulty bathing or dressing; or difficulty doing errands such as visiting a doctor’s office or shopping.

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The prevalence of a disability by gender indicates a higher percentage of females reporting a disability.

In terms of geographic location or metropolitan statistical area, we find that people living in rural areas report a higher prevalence of a disability than their urban counterparts.

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Lastly, when we consider education and poverty level, we see a higher prevalence of adults with a disability who did not complete high school (23.6%) than those who did complete high school and did not report having a disability (12.3). Similarly, 25% of adults living below the federal poverty level report having a disability compared to 9.6% of people living below the federal poverty level who do not report a disability.

Moving Forward What can be done to reduce health disparities experienced by people with disabilities? First of all, we must continue to refine and expand methods of data collection that capture the burden of disease and premature mortality among people with disabilities. With this information, we can develop a public health agenda for reducing health disparities among people with disabilities. Efforts to increase community awareness of health disparities experienced by all population groups including people with disabilities are needed. Using resources such as the CDC Health Disparities and Inequalities Report, it is possible to set priorities and argue for the implementation of programs and policies that will improve health outcomes and the quality of life for people with disabilities. Effective health promotion interventions, policies, and environmental change strategies can be tailored to meet the unique needs of persons living with different disabilities.

Building partnerships with state and local health agencies, community-based organizations, and other educational and civic institutions committed to improving community health are also key in creating communities, services and opportunities that support people with disabilities. CDC’s Office of Minority Health and Health Equity will continue to value the health and well-being of people with disabilities equally with other groups that experience health disparities. Toward this end, as data is available, we will analyze and report health disparities experienced by people with disabilities, and we will collaborate with our sister federal agencies and our colleagues within CDC to advance initiatives that will reduce health and health care disparities experienced by people with disabilities.

References Carter-Pokras O. and Baquet C. (2002) What is a “health disparity”? Public health Rep (117):426-34.

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Join us and learn all the steps for Dancing with Community!

Available Starting August 6, 2012 TASH Members $35 (Individual) $65 (Group) Non-Members $55 (Individual) $85 (Group)

All sessions are pre-recorded and available 24/7 for convenient access. Listen to each session as many times as you like! Webinar is available as individual sessions or as series. Rates start at just $35! Group rates apply to virtual or inperson groups of up to 10 individuals per purchase. All webinar participants have access to an online forum to view discussion questions from session presenters, ask questions and connect with other participants!

Dancing with Community is a seven-part webinar series that digs deep into relationship building and community inclusion for people with disabilities. In each session, come along for a unique journey of support that focuses on stepping into the role of a community citizen, and out of the role of agency client. We’ll get to know and understand each aspect of the “dance,” from taking the first steps onto the stage of community, to finding the right dance partners and learning the moves! This webinar series is intended for community support professionals and agencies interested in organizational change or finding innovative service approaches. Family members and groups of self-advocates will also find this content helpful in discovering what is possible in the community with the right supports. Anyone invested in the quality of life of people with disabilities will be informed and inspired by this series.

Sessions Include: The ‘Do-See-Doh’ of Why It’s Hard to Step Back and Why We Need to Dancing in Community: Connection Choreographing Your Way through the Community Get Out! What It’s Like to Leave Center-Based Practices and How to Get the Feel for Footwork with Community Partners The Intricate Ballet of Moving Staff from What is Known Today to the Elegant Dance of Community Welcoming A Circle Dance? Some Observations on Support Circle Arrangements So You Think You Can Dance? Taking Your Show on the Road: A Summary and Call to Action!

Learn More and Register at www.tash.org/webinar 18

TASH Connections  Fall 2011  www.tash.org


Dancing with Community www.tash.org/webinar Session Descriptions Learn all the steps for Dancing with Community! The ‘Do-See-Doh’ of Why It’s Hard to Step Back and Why We Need to Aaron Johannes, Spectrum Society for Community Living Why is it harder for people with disabilities to form lasting and reciprocal relationships with friends, coworkers, family members and neighbors? Or is it harder? And why are relationships so important anyway? These are the questions we’ll explore during this introduction to the Dancing with Community webinar series. Join us for a look at some of the findings from the Spectrum Society’s research, training and development division, which has been examining these questions with people with disabilities, families, staff, researchers and others for years. This session will cover what we know and what we might learn from each other, including those who have been tackling this issue with great success! Dancing in Community: Connection Sally Sehmsdorf, Total Living Concept There is a road from the eye to the heart that does not go through the intellect, so says G.K. Chesterton. In this session we will take that road to explore the meaning of community engagement. Why is connection so important for people? How do we recognize the impulse to connect and act upon it in ways that support people to be connected with people other than us? We will begin with the only tangible source of knowledge any of us have –our experience, our imagination and our shared humanity.

Join us and learn all the steps for Dancing with Community!

Choreographing Your Way through theDancing Community with Community is a seven-part webinar series that digs deep into Keri Parker, Total Living Concept relationship building and community inclusion for people with disabilities. In

each session, along forcommon a unique journey of support focuses on stepOur world will be a better place when everyone has accesscome to opportunities to all. It’s natural to belong!that You can be an exceptional ping intothrough the role a community citizen, and out of and theattention role of agency client. guide for any individual you support as you dance theof community together. With your eyes open focused on a few important tools, you’ll find great resources and get opportunities yourunderstand fingertips! In this webinar we’lloflearn identify” interests and discover We’ll to knowatand each aspect theto“dance, from taking the new interests by following threads; find community and resources in plain sight, as as dig the for hidden in familiarand first stepstreasures onto the stage of community, towell finding right resources dance partners Available Starting August 6, 2012 places; detect where and how the person you are supporting can participate and contribute with others who share their interests; cultivate thethose moves! strategies for successful involvement andlearning troubleshoot situations that don’t turn out as planned. Join us as we share, teach, uncover TASH Membersand rediscover resources and strategies that you can use to find involvement opportunities that best match the person’s interests with whom This webinar series is intended for community support professionals and $35 (Individual)you’re $65working! (Group) agencies interested in organizational change or finding innovative service Get Out! What it’s Like to Leave Center-Based Practices and How to get the Feel for Footwork with Community Partners approaches. Non-Members Jules Andre-Brown, Spectrum Society for Community LivingFamily members and groups of self-advocates will also find this content helpful in discovering what is possible in the community with the right $55 (Individual) $85 (Group) This webinar session examines what it’s like to step out of center-based practices into letting take the leadwill stepsbe of supports. Anyone invested in theand quality of lifea community of peoplepartner with disabilities dancing with the people you care about.informed We’ll explore how a group of people can find suitable partners and start the dance of community and inspired by this series.

acceptance. How do you let a partner hold the story and work through the challenges? What will other partners think when they see you dancing on the stage of community? In this session we’ll look at real examples from the Spectrum Society to see what happens when regular All sessions are communities pre-recorded and the home-base for people, and the moves to get on the dance floor of community! become

Sessions Include:

available 24/7 for convenient ac The Intricate of Moving Staff from What is Known Today to the Elegant Dance of Community Welcoming cess. Listen to each sessionBallet as many The ‘Do-See-Doh’ of Why It’s Hard to Step Back and Why We Need to Pat Fratangelo, Onodaga Community Living times as you like! In this webinar session we’ll examine theDancing change in staff role that is necessary in order for people to be seen as a true citizen and member of in Community: Connection their community, and not as a client of a system. By helping staff to better understand their new role, we can welcome a community in true Webinar is available as individual relationship theat person they are supporting. By growing natural relationships, staff in support roles can help a person to feel better consessions or as series. Rateswith start Choreographing Your Way through the Community nected to the community in which they live. just $35! A Circle Dance? Some Observations on Get Support Circle Arrangements Out! What It’s Like to Leave Center-Based Practices and How to Get the Michael Kendrick,orKendrick Group rates apply to virtual in- Consulting Intl.Feel for Footwork with Community Partners person groups of up to 10 individuWhen the idea of friends and allies is formalized into a “support circle” what exactly do we mean? In this webinar we look for a more precise als per purchase. Thefacilitate Intricate of then Moving Staff from What is ofKnown Today to theofElegant definition of what we might hope to create, and Ballet foster, and examine recent experiences successes and failures this model. The sharing of gifts in such an arrangement is almost limitless and reciprocal, but there are many challenges as support circles tackle issues Dance of Community Welcoming around decision-making All webinar participants have ac- and purpose. Participants in this webinar will learn more about methods of forming a support circle, problem-solvingforum during to difficulties, terms of the individual at the heart of the circle, and celebrating successes. cess to an online view staying on purposeAinCircle Dance? Some Observations on Support Circle Arrangements discussion questions from You session So You Think Can Dance? Taking Your Show on the Road: A Summary and Call to Action! presenters, ask Shelley questions andand conNessman Aaron Johannes, Spectrum Society for You Community Living Taking Your Show on the Road: A Summary and So You Think Can Dance? nect with other participants! Call to Action! This webinar will both summarize and expand on the topics covered in each webinar in this series. We’ll focus on action, engagement and new ways of looking at leadership. We’ll also seek to answer challenging questions. How do we help one person build a plan to deepen and expand their network? What can one person do to help? How can we keep these conversations going in our circles, workplaces and communities? Join us for this series finale.

Learn More and Register at www.tash.org/webinar

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Dancing with Community www.tash.org/webinar Presenters

Aaron Johannes, Spectrum Society for Community Living

Aaron is a proud parent and longtime foster parent to children with disabilities, as well as a service provider, consultant, workshop leader and graphic facilitator. He is the co-author of two books, 101 Ways to Make Friends: Ideas and Conversation Starters for People with Disabilities and their Supporters, and the companion volume, 101 Ways to Facilitate Making Friends: How to Engage and Deepen Support Networks for People with Disabilities. Aaron is also the author of Renegotiating Reciprocity: Supporting Children and Adults with Disabilities in our Families, Networks and Communities. A popular workshop leader, he and colleague Susan Stanfield have conducted more than 90 sessions with self-advocates, families, supporters and professionals on support networks, community based instruction, changing roles in agencies and other topics. Aaron and Susan, along with Shelley Nessman, are working with groups of selfadvocate researchers to translate government documents into plain language and graphics. Learn more at the Spectrum Society’s Research Training and Development division at www.101friends.ca or see their products at www.spectrumpress.com.

Sally has worked in the field of developmental disabilities for more than 27 years. She has worked as direct support staff, manager and coordinator of services in a residential setting; provided organizational development, staff training, conflict resolution to agencies and boards wishing to promote person-centered values; facilitated circles of support and person-centered planning for people with disabilities and their families; presented at conferences in the U.S. and Canada; co-facilitated a People First chapter; authored a chapter in Implementing Person Centered Planning; mediated multi-party conflicts for DDD; served as a Personal Agent for people in employment services; and is currently the coordinator of employee development at Total Living Concept. She has a Bachelor’s degree in Dance and German, and is a certified mediator.

Sally Sehmsdorf, Total Living Concept

Keri has worked as a community guide for Total Living Concept since 2003. In that role she helps isolated individuals with developmental disabilities connect to their communities in many different ways. While at Total Living Concept, Keri has gained experience in job coaching and development, and has been a presenter at TASH conferences throughout the country. In her free time, Keri enjoys reading, spending time with her dogs Capt. Rusty and Meatwad, and roller derby. Keri Parker, Total Living Concept

Jules helps to network for people who have experienced profound disabilities, including finding ways community can have reciprocal relations with people we care about. Jules has contributed in a series of roles with Spectrum Society for Community Living in Vancouver, Canada. He currently serves as the bridge between networks and communities to get involved in the lives of people. Over the last year Jules has focused on helping people experience travel internationally to Long, Paris and the United States, and supported people to be included in modern online experiences. Jules currently contributes to a variety of local and international projects and research, and has recently joined the TASH Community Living committee.

Pat Fratangelo, Onodaga Community Living

Pat has been the executive director of Onodaga Community Living for more than 20 years. When she first came to the agency it provided group living services. Over time the agency has transitioned under her leadership to one that provides personalized supports in living arrangements, with attention to employment, volunteerism and educational pursuits. All services are in the community and the agency has no structured services or programs; rather, each service is individually designed to match each person. Because OCL is community oriented it has worked to ensure that unpaid people be welcomed and a part of people’s lives. The mindset of staff also had to transition with this change of service. Pat is the co-author of a book, One Person at a Time and is currently working on two others books on organizational change. She is frequently asked to present on personalized support, organizational change and life sharing amongst other topics and has frequently presented in Australia, New Zealand, Canada, Ireland and the US.

Michael is known internationally for his work on service quality, leadership, the creation of safeguards for vulnerable persons, social integration, change, innovation, values, advocacy, the role of individual persons and small groups in creating advances, evaluation, alternatives to bureaucracy, personalized approaches to supporting people and reform in the human service field. He has worked in the disability, mental health and aged care fields for nearly 30 years. Michael is the author of Letting in the Light: Reflections on Leadership, Ethics and Human Services. He’s also the founder of a consulting firm, Kendrick Consulting International, focused on leadership and emerging developments in the fields of disability, mental health and aging. The firm undertakes work with governments, non-government organizations and many grassroots initiatives devoted to the needs, issues and rights of disadvantaged people. For more information about Michael Kendrick see www.kendrickconsulting.org.

Shelley Nessman, Spectrum Society for Community Living

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Jules Andre-Brown, Spectrum Society for Community Living

Michael Kendrick, Kendrick Consulting Intl.

Shelley Nessman is a consultant on Strategic Initiatives for Spectrum Society and is passionate about people finding their authentic voice through powerful stories and recognizes that community living offers a wealth of stories for a world that is hungry for inspiration. Throughout her more than 30-year career in community living, Shelley has been inspired by the incredible stories she has witnessed or heard and how they are often the catalyst for significant change. Underlying it all is her belief that when we deeply listen to one another, we are changed in ways that promote peace in our lives, communities and the world! Look for a campfire where people are regaling one another with their tales and that’s where you will find Shelley! Shelley has traveled much of Canada presenting in various roles to large and small groups, and supporting people with disabilities in leadership. One of her most recent journeys was certification in civic engagement and she’s particularly interested in new ways of fostering “conversations that matter.”

TASH Connections  Fall 2011  www.tash.org


Articles from our Contributors

Health Disparities Experienced by People with Disabilities by Race and Ethnicity: Double Jeopardy By Vincent A. Campbell, Ph.D.

Background on Disabilities and Health Disparities

T

he population of people with disabilities is large, diverse, and subject to disparities in health relative to the population without disabilities. Using the 2005 Survey of Income and Program Participation, Brault estimated the civilian non-institutionalized population of people with disabilities to include approximately 54 million people, or 18.7% of the total population1. However, depending on the survey used, the age groups included and the severity level specified in the survey questions (e.g., any difficulty doing activities, serious difficulty doing activities), estimates of the population size range from approximately 36 million, or 12%,2 for serious limitation for all ages to about 62 million, or 30% of all adults3. Disabilities can be present at birth, emerge during the developmental period, result from injuries, or occur as a result

of chronic disease as people age. Disability-associated health Author Vincent A. expenditures were estimated to be Campbell, Ph.D. about $400 billion in 2006 with costs for states ranging from $598 million in Wyoming to $40.1 billion in New York.(NY) (2005)4. The Agency for Healthcare Research and Quality indicates that substantial costs are associated with multiple chronic disabling conditions and that half the US population accounts for no to little health care costs while 5% account for half of costs5.

The Influence of Race and Ethnicity on Health Disparities Experienced by People with Disabilities Overall, people with disabilities have been reported to experience fair or poor health approximately four times more than their nondisabled peers on a proportionate basis and these proportional differences vary more or less depending on the specific racial or ethnic group examined6. The health of people with disabilities is poor because of factors that are not solely related to the health condition associated with their impairment. Factors that can affect their health potentially include preventable secondary conditions, attitudes and assumptions of society and health care providers, inadequate health care coverage, lack of public health data on this population and subpopulations, and inaccessible health care7.

1

Brault M. Americans With Disabilities: 2005, Current Population Reports, P70-117, U. S. Census Bureau,Washington DC, 2008, accessed 1/9/2012 from http://www.census.gov/prod/2008pubs/p70-117.pdf.

2

U.S. Census Bureau, 2008-2010 American Community Survey, Table DP02, Selected Social Characteristics with the United States. Downloaded from http://factfinder2.census.gov/faces/tableservices/jsf/pages/productview.xhtml?pid=ACS_10_3YR_DP02&prodType=table, January 12, 2012.

3

Altman B, Bernstein A. Disability and health in the United States, 2001-2005. Hyattsville MD: m National Center for Health Statistics, 2008.

4

Anderson WL, Armour BS, Finkelstein EA, Wiener JM. Estimates of state-level health-care expenditures associated with disability. Public Health Rep. 2010 Jan-Feb;125(1):44-51.

5

Stanton MW, Rutherford MK. The high concentration of U.S. health care expenditures. Rockville (MD): Agency for Healthcare Research and Quality; 2005. Research in Action Issue 19. AHRQ Pub. No. 06-0060.

6

Centers for Disease Control and Prevention. Racial/ethnic disparities in self-rated health status among adults with and without disabilities –United States, 2004-2006. MMWR 2008;57:1069-1073.

7

U.S. Department of Health and Human Services. Healthy People 2020: Disability and Health. Washington DC. Downloaded from http://www. healthypeople.gov/2020/topicsobjectives2020/overview.aspx?topicid=9November 21, 2011.

TASH Connections  Fall 2011  www.tash.org

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Articles from our Contributors Health Disparities Experienced by People with Disabilities by Race and Ethnicity continued from page 21

In addition, disproportionate percentages of people with disabilities experience social determinants of poor health such as low levels of education and income8 and environmental hazards such as inadequate and unhealthy housing9 when compared with people without disabilities. Table 1 presents data from the US Department of Labor, Bureau of Labor Statistics on the

comparative employment status of people with and without disabilities for 2010. The percentage of the population with a disability that is unemployed is roughly 57% higher than among people without disabilities; however, the percentage of people with disabilities who are not in the labor force is 106% times that of people without disabilities. Recent data extractions using

Table 1. Percentage employment status of the civilian non-institutional population by disability status and race/ethnicity, 2010 annual averages. Population >= 16 years, US Dept. Labor BLS, 2010 Racial/Ethnic Category

% Employed

% Unemployed*

% Not in labor force **

Total, age >= 16 years

58.5

9.6

35.3%

Disability

18.6

14.8

78.2%

White

19.3

13.6

77.6%

Black/African American

13.8

22.0

82.3%

Asian

16.0

12.0

81.7%

Hispanic/Latino

19.0

18.4

76.7%

No Disability

63.5

9.4

29.9%

White

64.6

8.5

29.4%

Black/African American

57.4

15.8

31.9%

Asian

62.5

7.4

32.5%

Hispanic/Latino

62.4

12.3

28.9%

* Persons are classified as unemployed if they do not have a job, have actively looked for work in the prior 4 weeks, and are currently available for work. Persons who were not working and were waiting to be recalled to a job from which they had been temporarily laid off are also included as unemployed. Receiving benefits from the Unemployment Insurance (UI) program has no bearing on whether a person is classified as unemployed. For more information on this and more, see the United States Department of Labor-Bureau of Labor Statistic web site at http://www.bls.gov/ cps/lfcharacteristics.htm#unemp ** Persons who are neither employed nor unemployed are not in the labor force. This category includes retired persons, students, those taking care of children or other family members, and others who are neither working nor seeking work. Information is collected on their desire for and availability for work, job search activity in the prior year, and reasons for not currently searching. For more information on this and more, see the United States Department of Labor-Bureau of Labor Statistic web site at http://www.bls.gov/cps/lfcharacteristics.htm#nlf

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8

Centers for Disease Control and Prevention. CDC Health Disparities and Inequalities Report — United States, 2011 CDC Health Disparities and Inequalities Report — United States, 2011; Social determinants of health--Education and income — United States, 2005 and 2009. MMWR 2011(Suppl):13-17.

9

Centers for Disease Control and Prevention. CDC Health Disparities and Inequalities Report — United States, 2011 CDC Health Disparities and Inequalities Report — United States, 2011; Environmental hazards—Inadequate and unhealthy housing, 2007 and 2009. MMWR 2011(Suppl):21-27.

TASH Connections  Fall 2011  www.tash.org


Articles from our Contributors Health Disparities Experienced by People with Disabilities by Race and Ethnicity continued from page 22

a data tool10 developed by the Division of Human Development and Disability in the National Center on Birth Defects and Developmental Disability at the Centers for Disease Control and Prevention (CDC) demonstrates disparities experienced by people with disabilities, stratified by race and ethnicity, on several health indicators. This system uses data from the Behavioral Risk Factor Surveillance System, a telephone-based survey that is conducted

in all 50 states, the District of Columbia and three territories. Table 2 presents the percentage of adults, age 18 years and older, who report a disability and the percentage of those with and without a disability reporting a disability who report their health to be fair or poor. Data for this table are aggregated for the years 2006-2010 in order to provide stable estimates.11 The Patient Protection and Affordable Care Act

Table 2: Disability Prevalence by Race/Ethnicity and Percentage with Fair or Poor Health16

Racial/Ethnic Category

% with a Disability

Percentage with a Disability Reporting Fair or Poor Health

Percentage without a Disability Reporting Fair or Poor Health

White

21.6

36.4

5.8

Black/African American

22.6

47.6

13.4

Hispanic/Latino

17.5

54.1

23.2

Asian

10.5

31.5

8.5

Native Hawaiian or Pacific Islander

17.9

47.6

13.4

Multi-race

30.6

45.3

9.6

Total

21.1

40.0

9.2

10

Centers for Disease Control and Prevention. Disability and Health Data System (DHDS). [updated year month date; cited year month date]. Available from: http://dhds.cdc.gov.

11

Data source -- Centers for Disease Control and Prevention. Disability and Health Data System (DHDS). [updated year month date; cited year month date]. Available from http://dhds.cdc.gov/dataviews/tabular?viewId=990&geoId=4&subsetId=&z=1; accessed November 21, 2011.

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Articles from our Contributors Health Disparities Experienced by People with Disabilities by Race and Ethnicity continued from page 23

Table 3: Current Smoking by Disability Status and Race/Ethnicity12

Racial/Ethnic Category

Percentage of Adults with a Disability

Percentage of Adults without a Disability

White

28.8

17.5

Black/African American

27.9

18.3

Hispanic/Latino

20.3

13.9

Asian

12.1

8.1

Native Hawaiian or Pacific Islander

27.2

19.3

American Indian or Native Alaskan

41.8

29.7

Multi-race

35.9

20.9

Total

27.8

16.7

Several provisions of the Patient Protection and Affordable Care Act (ACA) address health disparities and direct the US Department of Health and Human Services, within two years of enactment, to collect and report data for “any federally conducted or supported health care or public health program, activity or survey (including Current Population Surveys and American Community Surveys conducted by the Bureau of Labor Statistics and the Bureau of the Census) . . . to the extent practicable in five demographic categories: race, ethnicity, sex, and disability status for applicants, recipients, or participants” (pp.578-579)13. The express intent of this provision is to detect and monitor trends in health disparities (p. 580). Other provisions in ACA related to disability and health disparities include:  Establishing people with disability as a population

experiencing health disparities;

Table 3 presents the percentage of adults with and without a disability, age 18 years and older, who report that they are current smokers. Data for this table are aggregated for the years 20062010 in order to provide stable estimates.

 Directing that disability data be collected in clinical and

public health programs  Directing that disability data be collected to assess the

accessibility of health care facilities and equipment  Directing that data be collected regarding training of health

care providers in awareness of disability and care of people with disabilities. One of the key specifications within the law has to do the US Department of Health and Human Services developing standards for the measurement of disability. These standards were announced in October, 201114. Although additional questions about disability may be asked in major population-based surveys, 6 questions from the U.S. Census Bureau’s American Community Survey were established as the standard. These questions, and the age groups to which they pertain are:  Is this person deaf or does he/she have serious difficulty

hearing? (all ages);

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12

Data source: Centers for Disease Control and Prevention. Disability and Health Data System (DHDS). [updated year month date; cited year month date]. Available from http://dhds.cdc.gov/dataviews/tabular?viewId=1006&geoId=4&subsetId=&z=1; accessed November 21, 2011.

13

Public Law 111-148 (124 STAT. 119), Patient Protection and Affordable Care Act, March 23, 2010. Downloaded from http://www.gpo.gov/fdsys/ pkg/PLAW-111publ148/pdf/PLAW-111publ148.pdf on November 21, 2011.

14

U.S. Department of Health and Human Services. Implementation Guidance on Data Collection Standards for Race, Ethnicity, Sex, Primary Language, and Disability Status. Downloaded from http://aspe.hhs.gov/datacncl/standards/ACA/4302/index.shtml on November 21, 2011.

TASH Connections  Fall 2011  www.tash.org


Articles from our Contributors Health Disparities Experienced by People with Disabilities by Race and Ethnicity continued from page 24  Is this person blind or does he/she have serious difficulty

seeing even when wearing glasses? (all ages);  Because of a physical, mental, or emotional condition,

does this person have serious difficulty concentrating, remembering, or making decisions? (age >= 5 years);  Does this person have serious difficulty walking or climbing

stairs? (age >= 5 years);  Does this person have difficulty dressing or bathing? (age >=

5 years);  Because of a physical, mental, or emotional condition, does

this person have difficulty doing errands alone such as visiting a doctor’s office or shopping? (age >= 15 years). It is important to have a standard set of questions to measure disability in order to demonstrate the health status of the affected population. Inclusion of disability questions in major health surveys has been the first objective in national plans to improve the health of people with disabilities, Healthy People 201015 and Healthy People 2020. A report from CDC in 2011 noted the gap in disability data and the subsequent impact on many key national health objectives16. Beyond demonstrating the health disparities experienced by people with disabilities, epidemiologic research is needed to ascertain the risks to the health of people with disabilities, determine the portion of poor health that is preventable, and develop interventions that can address these risks. A recently inaugurated program at CDC is to identify strategies to include people with disabilities into health promotion, prevention, and protection programs that target the general population. The overall goal of this activity is to include people with disabilities into larger public health activities.

Summary and Future Activity The prevalence of disability is not randomly distributed in the population of the United States nor does the impact of disability affect the health of all members of society equally. There are substantial differences in the prevalence of disability between racial and ethnic groups, with relatively high occurrence among American Indians, Alaskan Natives and people who are multi-

racial and relatively lower occurrence among Hispanics, Native Hawaiians, other Pacific Islanders and Asians. While self-reported fair or poor health is high for all groups of people with disabilities, they are substantially elevated among Blacks, Hispanics, Native Hawaiians and other Pacific Islanders, American Indians and Native Alaskans. These are groups that are disproportionately affected by other social determinants of poor health such as poverty, low income, high rates of poverty and low educational levels. Some racial/ethnic minorities are disproportionately affected by disability, poor health, and social determinants of poor health. Additional research is needed to identify the specific risks to the health of people with disabilities, in particular those in the racial and ethnic groups most affected. Public policy, such as that set by the Affordable Care Act, is an important tool to bring the health status of people with disabilities and other demographic groups who have experienced health disparities to the attention of public health officials and health care providers. The impetus provided by ACA to gather data on disability status in federally conducted or supported health surveys, and in public health and health care programs, will increase the visibility of people with disabilities to public health officials and disability service providers. It is also important to raise the awareness of public health workers to make health communications and messages accessible to those with limitations in cognition, hearing and vision limitations. Health promotion activities related to healthy weight need to emphasize that people with mobility limitations may need accommodations and adaptations that will help them exercise. Like racial and ethnic minorities, people with disabilities are members of the public who need to be adequately served through public health efforts. National standards for culturally and linguistically appropriate services have been promulgated by the Office of Minority Health in the US Department of Health and Human Services17. A similar set of explicit guidelines would be useful for people with various forms of disability. Cooperative work among providers of public health will help to advance health equity for people with disabilities.

15

U.S. Department of Health and Human Services. Healthy People 2010, Disability and Secondary Conditions. Downloaded from http://www.healthypeople.gov/2010/Document/pdf/Volume1/06Disability.pdf on November 21, 2011.

16

Centers for Disease Control and Prevention. CDC Health Disparities and Inequalities Report — United States, 2011; Rational for regular reporting on health disparities and inequalities – United States. MMWR 2011(Suppl):3-10.

17

U.S. Department of Health and Human Services. National standards for culturally and linguistically appropriate services in health care: Final report. Downloaded from http://minorityhealth.hhs.gov/templates/browse.aspx?lvl=2&lvlID=15 on November 21, 2011.

TASH Connections  Fall 2011  www.tash.org

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Articles from our Contributors

Inequity to Equity: Healthy People, A Tool By Lisa Bundara Sinclair MPH, Health Policy Analyst, Centers for Disease Control and Prevention

P

ublic health efforts to address health inequities among racial ethnic groups extend to those who have disabling conditions and can benefit from public health interventions. To facilitate these efforts, it can be useful to:

1) have a basic understanding of the U.S. Healthy People initiative, 2) identify objectives that contain health indicators for people of color with disabilities, and 3) implement Healthy People to reduce health inequities. As an initiative that began in the United States in 1979, Healthy People has evolved into a national strategic plan that “communicates a vision for improving health and achieving health equity.”1 The U.S. Department of Health and Human Services, Office of Public Health and Science, Office on Disease Prevention and Health Promotion (ODPHP) coordinates its reformulation and publication every 10 years. There are several topic areas within the Healthy People plan. The Disability and Health topic area is coordinated by the Centers for Disease Control and Prevention, National Center on Birth Defects and Developmental Disabilities; the Office of Special Education and Rehabilitative Services, National Institute on Disability and Rehabilitation Research; and the National Institutes of Health, National Center on Medical Rehabilitation Research. These coordinating agencies are responsible for facilitating, monitoring, and periodically reporting on the objectives within this topic area.

There are four structural levels to the U.S. Healthy People plan. 1) The overall framework provides a vision, mission and overarching goals;

1

26

2) The various topic areas address populations, health conditions, and public health programs; 3) The objectives specify what should be accomplished through action; and 4) The measurements assess progress over the decade using a specified data source.

Author Lisa Bundara Sinclair MPH

In addition to the structural levels, key operational modes exist within Healthy People to ensure consistency. For example, an objective must be worded to mirror the terms used in the data source and to include all populations across the lifespan as much as possible. Creating an objective requires an extensive working knowledge of various national and state data sources paying special attention to what kinds of health and population indicators are available. Without a potential data source, an objective is not permitted. To ensure consistent target-setting across the Healthy People plan, each target for the decade is established using one of three methods: projection using statistical modeling of trend data; a default of 10% improvement; or a target that is consistent with existing program or agency efforts and goals. To understand the health status of various population groups, Healthy People uses a standard population table or template for most of the objectives. This population table is a major strength of Healthy People. It highlights data that are available for various major U.S. population groups including for example, race or ethnicity, disability status, age, education, income, regional location, sex, gender, chronic conditions, marital or military veteran status. It also clarifies that health disparities can be noted in population groupings for example, people of various race or ethnicity, and people with disabilities. The intersection of race, ethnicity, and disability can be found in the Healthy People Disability and Health topic area. The most

The Secretary’s Advisory Committee on National Health Promotion and Disease Prevention Objectives for 2020. Phase I report recommendations for the framework and format of healthy people 2020 [monograph on the internet]. Washington (DC): Office on Disease Prevention and Health Promotion, U.S. Government Printing Office, December 2008. [cited December 28,2011] Available from URL: http://www.acmha.org/content/reports/ HP2020_Phase_I_Report_121208.pdf

TASH Connections  Fall 2011  www.tash.org


Articles from our Contributors Inequity to Equity: Healthy People, A Tool continued from page 26

currently available health measures for people with disabilities by race and ethnicity can be found among the objectives in the Healthy People 2010 disability topic area.2 3 For example, Hispanic adults with disabilities had the highest rates of negative feelings that interfered with everyday activities (Objective 6-03; National Health Interview Survey (NHIS), 2008); the greatest difficulty with and lowest rates of engagement in social activities like shopping, movies or sporting events (Objective 6-04; NHIS, 2001); the lowest rates of access to health and wellness programs (Objective 6-10; NHIS, 2002); and the highest rates of not having the assistive technology they needed (Objective 6-11; NHIS, 2002). Mixed race (Black/White) adults with disabilities had the lowest rates of sufficient social emotional support (Objective 6-05; Behavioral Risk Factor surveillance System (BRFSS), 2008). Black adults with disabilities had the lowest rates of employment (Objective 6-08; NHIS, 2008); and the highest rates of environmental barriers affecting work participation (Objective 6-12c; NHIS, 2002). American Indian or Alaska Native adults with disabilities had the lowest rates of life satisfaction (Objective 6-06; BRFSS 2008). Mixed race populations had the highest rates of environmental barriers affecting home and community participation (Objective 6-12a, 6-12d; NHIS, 2002). If a data source used in Healthy People contains questions that identify people with disabilities, then it may be possible to analyze the data by race and ethnicity to clarify existing health inequities and develop refined approaches to addressing them.

4) Adopt specific objectives that highlight health inequities, link them to community resources, and implement evidenced-based interventions in homes or communities among populations experiencing health inequities. 5) Learn about the data sources (listed on the main website) for any of the objectives that you have adopted. Consider analyzing and publishing health equity data if it has never been done.

In addition to identifying opportunities for data analyses, Healthy People can be used to create a unified and cohesive effort to reduce health inequities across the United States. Here are some steps towards using Healthy People to reduce health inequities: 1) Tour the main Healthy People website at www.healthypeople. gov/2020/about/default.aspx to become familiar with the topic areas, objectives, data sources and baseline measures. 2) While at the main website, join the Consortium and list serve to receive updates. 3) Form a Healthy People interest group or select a liaison in your organization to stay abreast of Healthy People activities.

2

3

National Center for Health Statistics. DATA 2010 [online database]. Hyattsville (MD): National Center for Health Statistics, Centers for Disease Control and Prevention. [cited December 28, 2011]. Available from URL: http://wonder.cdc.gov/data2010/focus.htm. U.S. Department of Health and Human Services. Healthy people 2010: Final review [monograph on the internet]. Washington (DC): Office on Disease Prevention and Health Promotion, U.S. Government Printing Office, December 2010. [cited December 28, 2011]. Available from URL: www.cdc. gov/nchs/healthy_people/hp2010/hp2010_final_review.htm.

TASH Connections ď ˇ Fall 2011 ď ˇ www.tash.org

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A Call to Action by Ralph Edwards & Pamela Lamar Dukes

TASH is a unique organization. TASH is first and foremost a membership organization and members are the fount of ideas and action. Leadership on closing institutions, reforming education, and evolving models for full inclusion emerges from the membership. Therefore, for a “Call to Action” to be successful, it is necessary to have an informed and dedicated membership committed to action and verification that the call will be carried out by the board and management. Since the 2005 publication, “People of Color with Significant Disabilities and Their Families: Prevalence, Challenges, and Successes”, by the Joint Center for Political and Economic Studies, TASH received significant funding from the Kellogg Foundation to address issues related to people of color with disabilities. Several lessons have been learned and resources developed from these efforts. Subsequently, TASH has been enabled to:  Engage more than 200 individuals of color in its own

conferences and those of other national disability advocacy organizations;  Partner with the Arc, National Down Syndrome Congress,

American Association of Intellectual and Developmental Disabilities (AAIDD), National Council on Independent Living, and Autism Society of America to formulate and sign a Joint Resolution on Cultural Competency;  Collaborate with Georgetown University’s National Center

on Cultural Competency to design and propagate a webbased cultural competency self-assessment tool - (available at http://www.gucchdgeorgetown.net/NCCC/CLCADO/);  Conduct a cultural competency self-assessment of our

membership and Board; and  Present at the Congressional Black Caucus Health Braintrust

promoting the concerns of people with disabilities as part of discussion on health disparities. For those unfamiliar with the usual intensity of TASH actions in regard to its priorities, these may be perceived as significant accomplishments; for others, this is merely a good start. Considering the Kellogg resources, the staff / Board expertise and

28

experiences to build on, and some missed opportunities, revisiting and updating the original 2005 “Call to Action” is helpful. In 2005, a list of recommendations was included in a document entitled “Create A Voice.” These recommendations included: (a) raise awareness of the TASH community, advocacy organizations, and policy-makers; (b) identify / engage / empower people of color, (c) assist national advocacy organizations in increasing their cultural competence; and (d) identify / engage organizations of color in disability advocacy. With Kellogg Foundation support, notable progress was made, as listed above, regarding cultural competency and diversity. There is little doubt that these efforts should be heralded, but this is also a time to examine our current commitment and ask ourselves, have we done enough and what will our efforts look like in the future? Subsequent to transference of Kellogg Foundation funding from the people of color project to TASH operations, support to these efforts diminished. Contact with most individuals and families waned, as did some efforts to continue nurturing national disability advocacy organizations to increase their cultural competency. Absent an awareness of the history of the people of color project, its conceptual and financial contribution to TASH, responsibility and commitment for cultural competency was limited. This resulted in missed opportunities of TASH continuous leadership regarding cultural competency and disparities in the disability field. This is of course unfortunate, as TASH was clearly at the forefront, raising awareness of a vulnerable population and strategies to reduce disparities. Culture and race are issues that permeate almost every aspect of our society. As such, it is critical that all opportunities be taken to consider the impact culture and race may have on all issues that are relevant to TASH’s mission. For example, during a recent Congressional Briefing, Carol Quirk (former TASH Board President) presented A Does of Reality: Taking a Hard Look at What the Data Tells Us about Education Performance, Outcomes and Disparities. Again, these actions are to be commended, but must be followed with more efforts to raise awareness and keep issues regarding people of color with disabilities at the front and center of all TASH efforts. Specifically, the TASH National Agenda Committees and publications should be called upon

TASH Connections  Fall 2011  www.tash.org


to address the disparate experiences of individuals of color with significant disabilities as a standing item with their respective agendas. Considering the TASH Mission, to serve those “most at risk”, we should build on the financial resources we have been given and take a leadership role in (externally) reaching out to organizations of color, particularly civil rights and compatible professional groups of color; nurture consensus and collaboration of disability advocacy organizations on cultural competency and inclusion; and educate policy-makers and funders on the depth and extensiveness of disparities and opportunities for their reduction. Internally, it is essential that this part of TASH history be declared and shared. Absent such declaration, current and future

members are oblivious to TASH’s past (and indebtedness?) and the possibilities for the future. Inculcating cultural competency throughout the organization, like curb cuts, benefits everyone, not just people of color. TASH is a unique organization that does not seek the “cause célèbre” nor shun challenges because they are difficult or unpopular. We stand with those who are “most at risk.” An emphasis on individuals of color, particularly in light of financial support TASH has received in relationship to this population, is consistent with our values and history as well as responsive to research findings. As TASH members become more informed of the disparate experiences of people of color with disabilities, hopefully, a persistent insistence to act will follow.

SPECIAL FEATURE: BOOK REVIEW

“i am intelligent” by Peyton Goddard and Dianne Goddard

Reviewed by Pat Amos

i am intelligent” is both the title of a newlypublished book by Peyton Goddard and her mother Dianne, and the battle cry of a new generation of self-advocates who have found a voice through assistive technology and specialized support strategies. Unlike the first breakthrough generation of authors with autism, such as Temple Grandin, Sean Barron, and Donna Williams, Peyton represents those who once were left in silence or considered

TASH Connections  Fall 2011  www.tash.org

minimally verbal, but now have access to more powerful and inclusive approaches to communication, language, and speech. What they are saying deserves our full attention.

29


Special Feature: Book Reivew: “i am intelligent” The Goddards’ account of Peyton’s extraordinary life represents this genre at its best: detailed, insightful, and courageous in its willingness to contrast what Dianne observed and believed was occurring to her child with the inner story as Peyton was eventually able to recount it. Anyone who has ever been told that a challenging behavior is “just a symptom of autism” (or any other disability) to be targeted for swift elimination should acquire the Goddards’ book as an antidote to this advice. Peyton and Dianne lead the reader to consider the many ways in which a person’s actions are meaningful and communicative, calling for mutual exploration and engagement. A recurring theme in Peyton’s comments is her use of the term “pity.” Peyton wants no pity, and makes it clear that the attitudes of others—even when well-meaning—posed a huge obstacle to her development. She is acutely aware when others feel pity for her or for her parents; she picks up on stares, tone of voice, and patronizing responses. In contrast, when she is accepted unconditionally by family, her friend Hollyn, and others in

the community, her response is joyous. She feels liberated and motivated. Fortunately, her parents figured out quickly how debilitating the “readiness” agenda of segregated schooling was for Peyton, and demanded her full inclusion in school, community, recreation, and eventually in a local college. The book eloquently depicts how segregation and low expectations became selffulfilling prophecies, creating a very different Peyton from the one who emerged when pity was banished. “i am intelligent” is also a story about the abuse of vulnerable people in our society. Even within the protective circle of a loving family, Peyton twice fell victim to sexual and other physical abuse, which she was unable, at the time, to report. The statistics on such abuse of people with developmental disabilities are sobering, and Peyton’s experiences fit two common patterns: one pair of abusers were members of her extended family, trusted to care for her in her home when her parents were out. The other was the janitor at a segregated school she briefly attended; Dianne remarks on the danger of self-contained settings where no peers or outsiders are available to witness and report. It is painful but very instructive to read of the behavior that developed after such abuse, and to see how it was misinterpreted as new or worsening symptoms of Peyton’s autism. We have come a long way in our understanding of the effects of abuse and subsequent traumatic stress on people with severe disabilities, and this book will take us even further on the path to understanding. Peyton’s story ends—and her long-awaited future begins - with an account of her experiences as her college class valedictorian, her emergence as an advocate and teacher in her own right, and the start of a romance. Readers will wish her all the best, and hope to hear more from this intelligent and very distinctive voice in the years ahead. Pat Amos TASH Board, ex oficio pat.amos@verizon.net

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browse our complete catalog of past webinars online.

discussion questions, ask your own and see what others

View available sessions on the above topics and much

are talking about on the forums.

more and order the webinar session or series on DVD. Find the catalog at www.tash.org/webinar

www.tash.org/webinar TASH Connections  Fall 2011  www.tash.org

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SPECIAL FEATURE

Revisiting the 2011 TASH Conference

I

n what cannot concisely be summed up as anything other than a family reunion, more than 1,000 passionate advocates, family members, teachers, service providers, researchers and other professionals descended upon Atlanta to share information, new ideas and inspiration, reinvigorating long-time TASH members and welcoming new attendees into TASH. TASH’s 36th annual conference was a resounding success and we could not be more appreciative to all those who were involved as organizers, presenters, and attendees! We offer special thanks to the Local Host and Conference Committees, who helped create events, recruit volunteers and raise funds to make the TASH Conference as warm and welcoming as possible. Planning for the 2012 TASH Conference is now well

32

Sharon Lewis, Commissioner of the Administration on Intellectual and Developmental Disabilities, kicks off the TASH Conference with a rally and call to action to support lives in the community for people with disabilities.

underway. We hope to see you again at the 2012 TASH Conference November 28 – December 1, 2012 in Long Beach, California!

TASH Connections  Fall 2011  www.tash.org


Special Feature: Revisiting the 2011 TASH Conference Opening Rally and Welcome Reception The 2011 TASH Conference kicked off with a keynote by Sharon Lewis, Commissioner of the Administration on Intellectual and Developmental Disabilities, formerly ADD, who called on attendees to get fired up in their advocacy for home- and community-based services and supports that facilitate lives in the community.

The TASH Conference featured an opening rally and reception to get attendees excited and help attendees meet before jumping into the conference.

Welcome Dinner Featuring Norman Kunc, a world-renowned advocate and storyteller, this event brought together TASH supporters old and new to celebrate TASH’s 35 plus years of advocacy.

The 2011 Welcome Dinner at the TASH Conference brought together long-time TASH members and newcomers for an evening of celebration and sharing.

Norman Kunc was the keynote speaker during the 2011 Welcome Dinner at the TASH Conference. He used his humorous stories to drive home important messages of inclusion and advocacy for attendees.

In Your Own Words … Comments from Conference Evaluations

“I LOVED Norman Kunc. He set the stage with a brilliant lecture.”

TASH Connections  Fall 2011  www.tash.org

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Special Feature: Revisiting the 2011 TASH Conference Keynote Speakers Keynote speakers Kate Gainer, John O’Brien, Rob Horner and Rev. Dr. Durley infused the 2011 TASH Conference audience with messages of insight and inspiration as they discussed their experiences in the disability field.

John O’Brien discusses the importance of people with disabilities having access to full lives in the community.

Keynote speaker Kate Gainer speaks to conference attendees about her multiple minority statuses as an AfricanAmerican woman with a disability.

Rev. Gerald Durley inspired attendees with stories that drew upon his experiences as a civil rights leader and the connections they have with the disability rights movement.

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Keynote Speaker Rob Horner highlights the connections between research and practice, and how both are necessary in advancing the rights of people with disabilities.

Keynote speeches during TASH Conference motivated and inspired attendees for another year of values-based advocacy in their communities and regions.

TASH Connections  Fall 2011  www.tash.org


Special Feature: Revisiting the 2011 TASH Conference Poster Presentations With over 100 poster presentations on the latest research as well as innovative programs, services and projects impacting the disability field, TASH attendees had the chance to interact with researchers, advocates and professionals about their areas of expertise.

Ricardo Thornton of Project Action! proudly displays his presentation for the 2011 TASH poster presentations.

Stephen Hinkle asks questions about a poster at TASH’s poster presentation event.

The TASH Conference poster event featured more than 100 presentations on inclusion topics from around the world.

TASH Connections  Fall 2011  www.tash.org

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Special Feature: Revisiting the 2011 TASH Conference Concurrent Presentations TASH Conference attendees had more than 200 concurrent presentations in the areas of inclusive education, employment, community living, human rights and diversity & cultural competency to choose from.

Harvey Lavoy (left) and Tracy Thresher (right), from the documentary, Wretches & Jabberers, share a presentation on communication.

The 2011 TASH Conference featured more than 200 concurrent presentations focused on inclusion in all aspects of life.

In Your Own Words … Comments from Conference Evaluations

“Kate Gainer’s personal testimony was so powerful on many levels. I hope Kate will be invited again to speak at TASH.”

Barbara McKenzie shares her experiences as a parent of a child with a disability and how she worked to facilitate full inclusion and high expectations for her daughter.

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TASH Connections  Fall 2011  www.tash.org


Special Feature: Revisiting the 2011 TASH Conference Community Living Open Space Gathering The Open Space Gathering, led by the TASH Community Living committee, was held to help attendees design exactly the learning, sharing and revitalizing experience they needed from the TASH Conference. Facilitated by Judith Snow and Joe Donofrio, attendees were able to create sessions, conversations and informal opportunities to come together on a variety of topics.

The Community Living Open Space Gathering was open to all attendees throughout the conference, giving attendees the opportunity to design informal presentations and workshops around topics they wanted to see.

Participants at the Community Living Open Space Gathering discuss topics that are important to them in an informal environment. Here, we spot Norman Kunc, Judith Snow, Barbara McKenzie and others!

In Your Own Words … Comments from Conference Evaluations

“The community gathering was wonderful – so many amazing people in one room.”

StoryCorps TASH was very proud to partner with StoryCorps in recording the stories of people with disabilities and their families on-site at the 2011 TASH Conference. The use of storytelling as an agent of change has inspired wide-spread impacts in a number of different social justice movements. This partnership sought to bring greater attention to the disparate experiences that people with disabilities of diverse backgrounds and their families face.

Sue Jamieson, lead attorney in Olmstead v. LC & EW, which was decided by the U. S. Supreme Court, discusses her experiences on the case during a joint StoryCorps interview with Lois Curtis, the case’s original plaintiff.

TASH Connections  Fall 2011  www.tash.org

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Special Feature: Revisiting the 2011 TASH Conference

Lois Curtis, the original plaintiff in the Olmstead v. LC & EW case, voices her experience in the lawsuit during her interview.

Nandy Isaac reacts as her mom, Nalini, talks about her first experience seeing an individual with a disability in India during their StoryCorps interview. The story later aired on StoryCorps Atlanta’s website at http://www.pba. org/post/storycorps-nalini-nandi-isaac.

Employment for Youth in Transition Conference within the TASH Conference Hosted in collaboration with the Georgia Department of Labor -Division of Vocational Rehabilitation Services, the Mitsubishi Electric America Foundation, the HSC Foundation, the Georgia Department of Education and Southeast TACE, this two-day event featured best practices in youth transition that result in integrated employment for young people perceived as the most challenging to serve. With more than 250 participants in-person and via live-streaming, this event provided a “shot in the arm” to vocational rehabilitation counselors looking to brush up on knowledge and identify new strategies and resources in the field. One vocational rehabilitation counselor remarked, “Often we have to fly by the seat of our pants. We never know what we’re going to run into from day to day, so having the up-to-date information and connections from TASH was invaluable.”

Nalini Isaac (left) and Nandy Isaac, a mom and daughter team, get set up for their StoryCorps interview at the TASH Conference.

In Your Own Words … Comments from Conference Evaluations

“It’s great when you take teams to have them learn more than just severe disability information because social justice transcends all people.”

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TASH Connections  Fall 2011  www.tash.org


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2012 TASH Conference Registration Form November 28-December 1, 2012 www.tash.org/2012tash

Long Beach, California

Conference Registration TASH Member? TIndividual TOrganization (organization member name): _______________________________________________ First Name: ____________________________ Last Name: ____________________________ Badge Name: ____________________________ Organization Badge (if applicable): _______________________________________________ Address: _____________________________________________ City/State/ZIP: ___________________________________ Country: _______ Phone: ___________________________________ E-mail: ___________________________________ Registering more than one person? You only need to complete the payment section once, but we ask that you submit conference registration details (this section) for each individual you wish to register. Registration Type Advocate: person with a disability, family member, direct support staff or other individual not employed in the disability field. Professional: person employed in the disability field or related field. Student: part-time or full-time student in a disability-related academic program.

Full Conference Registration

Early Bird (by Sept. 1) Member

Non-Member

Regular (Sept. 2-Nov. 1) Member

Non-Member

Late (Nov. 2-Onsite) Member

Non-Member

Advocate

T $175

T $205

T $225

T $255

T $275

T $405

Professional

T $325

T $355

T $375

T $405

T $425

T $455

Student

T $200

T $230

T $250

T $280

T $300

T $330

One Day Pass

Early Bird (by Sept. 1) Member

Non-Member

T $125 Includes admission to one day of the TASH Conference

Post-Conference (Dec. 1)

Select day

T $155

Regular (Sept. 2-Nov. 1) Member

Non-Member

T $150

T $180

Late (Nov. 2-Onsite) Member

Non-Member

T $175

T $205

T Wednesday (November 28) T Thursday (November 29) T Friday (November 30)

Early Bird (by Sept. 1)

Regular (Sept. 2-Nov. 1)

Late (Nov. 2-Onsite)

Advocate

T $60

T $65

T $75

Professional

T $100

T $125

T $150

Student

T $70

T $75

T $85

Please note: the purchase of a non-member conference registration or one day pass includes Basic TASH membership. You may discontinue this membership by contacting TASH at info@tash.org. Membership details are on the following page.

Demographic Information (optional) Which of the following best describes you? (select all that apply) TPerson with Disability TFamily Member TStudent TProfessor/Researcher TEarly Intervention TAdult Service Provider/Related ServicesTSpecial/General Educator TGovt/Legal/Public Policy TOther _________________________ What is your race or ethnicity? (select all that apply) TAmerican Indian or Alaska Native TAsian TNative Hawaiian or Pacific Islander TBlack or African American TWhite/Caucasian THispanic/Latino TOther _________________________ Are you a first time TASH Conference attendee? TYes TNo Would you like to participate in the TASH Conference mentorship program? TYes, as a mentor TYes, as a mentee TNo

-Continued on Next Page-

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TASH Connections  Fall 2011  www.tash.org


Accommodations Information (optional) Will you need simultaneous translation? TYes TNo

If yes, for what language? _________________________

Do you require a personal assistant? TYes TNo Do you need any reasonable accommodations? _____________________________________________________________________________ ______________________________________________________________________________________________________________________ ______________________________________________________________________________________________________________________ Do you have any dietary restrictions? _____________________________________________________________________________________

TASH Membership (current members please skip - required for non-member registrations) Conference registration for non-members includes Basic Membership by default. To upgrade to another membership type, you must pay the cost difference. Please select from the following membership types. Benefits vary by membership type. (A complete description of member benefits is available at www.tash.org/membership) Basic $0

Standard $45

Premium $120

Student $15

Sm. Org $220

Lg. Org $320

(regular $30)

(regular $75)

(regular $150)

(regular $45)

(regular $250)

(regular $350)

1 COPY

1 COPY

Research and Practice for Persons with Severe Disabilities, the official TASH research journal (print copy)

X

Research and Practice for Persons with Severe Disabilities, (online access to current and archived issues)

X

X

X

X

Connections, the quarterly magazine written by and for TASH members (includes current and archived issues)

X

X

X

X

X

X

TASH in Action bi-weekly e-newsletter

X

X

X

X

X

X

Training discounts for webinars, publications and other offerings

X

X

X

X

3 STAFF

5 STAFF

Reduced registration rates for TASH Conference and events

X

X

X

X

3 STAFF

5 STAFF

Affiliation with a TASH Chapter

X

X

X

X

X

X

Advocacy Alerts & Updates

X

X

X

X

X

X

TSelect

TSelect

TSelect

TSelect

TSelect

TSelect

------------> 

X











TSelect to opt out of TASH membership (non-member registration rate applies)

Payment Information TCheck (make payable to TASH)

Credit Card (select card type) TAmerican Express TVisa









TPurchase Order 

P.O. #: ______________

TMasterCard TDiscover

(send copy of purchase order with registration)

Card #: __________________________________________ Expiration: ______________ Name on Card: __________________________________________ CVV: ______________ Authorized Signature: __________________________________________ Would you like to make a tax-deductible donation to TASH? T$10 T$25T$50 T$100 T$ ______

Total Payment (add conference registration total plus membership balance and donation, if applicable) $: ______________ Please submit this registration form via mail, fax or e-mail. With questions, contact (202) 540-9020. TASH 1001 Connecticut Ave, NW, Suite 235 Fax (202) 540-9019 Washington, DC 20036 E-mail conference@tash.org

TASH Connections ď ˇ Fall 2011 ď ˇ www.tash.org

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Registration Policies Registration will not be accepted without full payment online or by check, credit card or official purchase order. All checks must be in US dollars and made payable to TASH. Registration Type Advocate: person with a disability, family member, direct support staff or other individual not employed in the disability field.

Personal assistants Personal assistants are not expected to pay a conference registration fee. However, personal assistants are expected to register and attend sessions with the individual they are supporting. If you plan to bring a personal assistant, identify that you will bring a personal assistant during registration and complete your registration. Once this is complete, please contact the TASH office at conference@tash.org or (202) 540-9015 so we can register the personal assistant directly.

Professional: person employed in the disability field or related field. Reasonable accommodations and dietary restrictions Student: part-time or full-time student in a disability-related academic program. Presenter registration All conference presenters must register and pay the registration fee for the conference. If presenters wish to attend only on the day they present, they may register for a one-day pass. If all presenters listed on a presentation are not registered by September 15, 2012, the presentation will not be included in the conference. Cancellation A 15% service charge will be assessed for processing refunds. All cancellations must be requested in writing (fax and e-mail are acceptable) and must be received (not postmarked) in the TASH office by 5 p.m. ET on November 2, 2012. No refunds after November 2. All requests for refunds should state the registrant’s name and the amount of payment. “No shows” at the conference will be billed the full registration fee. We regret that we cannot offer refunds for “no shows,” however, substitutes are welcome.

Individuals with disabilities requesting reasonable accommodations and/or dietary modifications at the conference should indicate necessary accommodations during the registration process. We cannot guarantee accommodations and/or dietary modifications for requests received after November 2, 2012. Mentorship Program The TASH Conference Mentorship Program offers the chance for attendees to link up with an experienced TASH Conference attendee before heading to the 2012 conference. If you have specific questions about the TASH Conference experience, or you just want to know someone familiar before heading to conference-wide events and receptions, this is a great way to connect. We encourage anyone who is interested to participate as a mentor or mentee. Matches will take place several months prior to the conference.

Registrant substitution Substitutions for a registrant who can no longer attend the conference can be made at any time. If the substituted registrant does not fit into the same registration category, they will be responsible for payment of the difference in conference registration fees.

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TASH Connections  Fall 2011  www.tash.org


Association News New TASH Membership Levels Take Effect For the past 37 years, TASH has sought to bring about positive change in the lives of people with significant disabilities. This effort has been led by TASH members across the nation and abroad – people whose remarkable contributions have advanced advocacy, research and professional practices that hold true to the values we share. But despite numerous victories, there are so many more challenges ahead. These challenges can only be met with a strong, unified presence of folks just like you who share a commitment to core values. For this reason, TASH has made significant changes to its membership structure.

TASH Connections  Fall 2011  www.tash.org

Effective June 15, 2012, TASH membership is available at rates as low as $30 per year, and with benefits tailored to fit the interests and needs of TASH members. The change is intended to create a significantly larger, more vibrant and demonstrably more influential community of advocates and professionals. TASH members—we’re counting on you to spread the word. Share this news with colleagues and friends. Tell them to visit www.tash.org/membership.

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Association News National Youth Leadership Network Commits to TASH Resolution on Cultural Competency The National Youth Leadership Network became the latest in our growing list of organizations to have signed onto a resolution on diversity and cultural competency. The National Youth Leadership Network is a youthled organization that works to build power among people with disabilities between the ages of 16 and 28. This resolution is available on the TASH website. In it, it reads, “Cultural and linguistic competency is a prerequisite to fully embrace diversity. This developmental process enables effective crosscultural collaboration and enhances organizational capacity through its permeation in every aspect of organization/community activity.” Others to have signed the resolution include the American Association on Intellectual and Developmental Disabilities, Autism Society, National Down Syndrome Congress, National Council on Independent Living, and TASH. Read more at http://tash.org/national-youthleadership-network-becomes-latest-to-sign-resolution-on-culturalcompetency/

Dept. of Education Reveals National Data on U.S. Schools, TASH Responds Education Secretary Arne Duncan and Assistant Secretary for Civil Rights Russlynn Ali unveiled the Civil Rights Data Collection, a public data set that explores inequities in U.S. schools. The data show alarming disparities for students of diverse racial and cultural backgrounds and those with disabilities, particularly in the areas of restraint and seclusion. According to the data, students with disabilities are 12 percent of all students, yet they comprise nearly 70 percent of students physically restrained by adults in their schools. African American students are 21 percent of all students with disabilities, yet they are 44 percent of students with disabilities subjected to mechanical restraint. TASH has

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responded publicly, commending the Department for making this information available, and strongly urging federal lawmakers to pass legislation to prevent restraint and seclusion in schools. You can find TASH’s review of the data, as well as a written response to the Department, at http://tash.org/dept-of-education-revealsnational-data-on-u-s-schools-tash-responds/

TASH Issues Response to AASA on Controversial Restraint and Seclusion Report The American Association of School Administrators issued an ill-informed report in which it voiced support for restraint and seclusion use on children in our schools. The report gained much public attention, and TASH has responded to bring clarity and truth to the conversation. Among other allegations, the AASA report suggests that parents either submit to restraint and seclusion use, or risk having their child institutionalized. TASH responded publicly to set the record straight on restraint and seclusion. You can find the complete response at http://tash. org/tash-responds-to-aasa-position-supporting-restraint-andseclusion-in-schools/

TASH Webinar Series on Inclusive Education a Hit Early in 2012, TASH members and others learned about Building Inclusive High School Communities from some of the leading experts on inclusion – Cheryl Jorgensen, Michael Wehmeyer and Hank Bohanon. These presenters offered insights into the latest thinking on inclusive schools and supporting students through self-advocacy, differentiated instruction and UDL, youth engagement, relationship building and preparation for life in the community. The content was such a hit that TASH will be making it available again in late-summer/fall 2012. Don’t miss your chance to participate in these three in-depth learning opportunities for as low as $35 per session. More information will be made available at http://tash.org/webinar, or you may contact us at (202) 5409014 or priley@tash.org.

TASH Connections  Fall 2011  www.tash.org


Association News Mosakowski Family Gives Valuable Support TASH was honored to receive a $10,000 general operating support grant from the Mosakowski Family Foundation. Known for their remarkable philanthropy and commitment to translating research to practice and strengthening organizations, schools and hospitals, William and Jane Mosakowski have made a real difference in the lives of children, adults and families. This general operating grant enables TASH to support its mission by ensuring we have adequate financial resources. TASH is grateful to the Mosakowskis for their ongoing generosity!

Shouldn’t School Be Safe? Webinar Explores Restraint and Seclusion in Schools Every day, school children are at risk of restraint, seclusion and other aversive interventions that cause physical and emotional trauma, and even death. These practices are used in schools across the country, despite evidence of the harmful impact they have on students, staff and others who witness these events. And while advocates push for federal legislation to prevent these acts, protecting children from restraint and seclusion is up to you! In early 2012, TASH release a webinar series to help people become agents of change in their communities. Through a four-part series, this webinar covered the existing protections against these practices under education law; what parents, advocates and attorneys should know about keeping students safe; the business case against restraint and seclusion; and what the research in mental health and child development is telling us about long-term and very dangerous effects of restraint and seclusion. TASH will be bringing back this series in latesummer/fall 2012. More information will be made available at http://tash.org/webinar, or you may contact us at (202) 540-9014 or priley@tash.org.

Parent to Parent USA Joins APRAIS We’re excited that Parent to Parent USA has become the most recent addition to the APRAIS network of advocates! Parent to Parent has provided support to families of children with disabilities for more than 36 years. They match those seeking information and support with experienced, trained parents who can offer their time and guidance. APRAIS, which is the Alliance

TASH Connections  Fall 2011  www.tash.org

to Prevent Restraint, Aversive Interventions and Seclusion, was created in 2004 to protect children with significant disabilities from abuse in schools, treatment programs and residential facilities. Let by TASH, APRAIS is comprised of leading disability advocacy organizations. You can learn more about Parent to Parent USA at http://p2pusa.org, and learn more about APRAIS at http://tash.org/aprais.

TASH Webinar on PBS in Community Settings Why are traditional behavior management techniques and adult program designs so often unsuccessful? Because professionals are tasked with trying to control another person’s behavior. By shifting to a model of self-management, we’ve learned to build relationships of mutual understanding and respect that promote self-confidence, create a desire for positive change, and place individuals in the driver’s seat of their support services. This was the focus of a May 2012 webinar series that examined positive behavior support in community settings. Presenters included Toby Bazan and Jose Perez, self-advocates in California, along with Scott Shepard, director of Avenues Supported Living Services. Due to ongoing interest in the subject, TASH will be releasing the webinar once again in late-summer/fall 2012. More information will be made available at http://tash.org/webinar, or you may contact us at (202) 540-9014 or priley@tash.org.

Recap of the 2011 Chapter Leadership Workshop Chapter leaders gathered in Atlanta for the annual workshop during the TASH Conference. This year’s theme was “Chapters are the Heart of TASH.” Those in attendance brainstormed ways in which chapters can work on their own and in conjunction with the national office to increase advocacy efforts and interest in TASH. Chapter leaders also discussed the SHARE TASH membership campaign, which centers on chapter participation to earn scholarships for self-advocates and family members to the TASH Conference. Representatives from TASH chapters are expecting a big year in 2012 and will be meeting throughout the year to form plans and share information.

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TASH Gratefully Acknowledges the Following Donations of Time and Money Ben Adams Patricia Amos Kay Aprea Emmanuel Asiedu Kristine Atanley Elise Baach Linda Bambara Gregory Bandru Rebecca Barbieri Vicki Barnitt Suzanne Bartlett Dean Beaupain The Bennett Family Marina Berthiuame Maunda Bethel Kwang-Sun & Kym Blair Hope Block Vaughn Bouchard Martha Brecher Jacqueline Bronner Lou Brown Pamelazita Buschbacher John Butterworth Deborah Chen Brandy Clark Dale & Leslie Clark Ann Cody Bernard Cooney Margaret Cooper Patrick & Barbara Cyr Yoshiko Dart James & Linda Deabay Monica Delano Chris Devaney Sylvia & Robert Diehl Cheryl Dougan June Downing Phillip Drumheiser Teri Ehrenhardt Joanne Eichinger Debbie Einhorn

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Jane Erin Barbara Ernst Sally Fairley Bob & Gail Fanjoy John Favour Philip Ferguson Micah Fialka-Feldman Marsha Fisher Robyn Fitzgerald Nora Flamer Nyla Flamer William Freeborne Marvin Friedman Gerrie Frohne Deborah Gallagher Joseph Gaskin Julianne Gassman Donna Gilles Alexander Gonzalez Jamie Gordon Judith Gran Thelma Greene Glen Gregory Sean Gregory Dianne Hansen Jane Hartley Lukas Haynes Bryna Helfer Joseph Hemsley Lois Henderson Judith Heumann David Hoppey Pamela Hunt Donna Inkster Rose Iovannone Lewis Jackon Lewis Jackson Lindsay Johnson Young-Gyoung Kim Haley Kimmet Debbie Kinert Helen King

Jennifer King Margaret Kinsell Dennis Kirkman Linda Knight Ann Kremer James Kuntz Steven & Cynthia Kurth Kenneth Lakin Elaine Laurino Leslie Lederer Byoung Lee Jungyul Lee Linda Lee Rochelle Lentini Kay Lipsitz Doug Loeffler Sharon Lohrmann Serena Lowe Danielle Macas Melissa Madill Fran Maiuri Georgia Manzo Lisa Massa Kathleen Masterson Jason McAndrew Sandra McClennen Melissa McCormack Catherine McCoy Patricia McDaid John McDonnell Kowana McKinney James & Linda Meehan Patricia Merchant Lisa Mills Pat Mirenda Anthony & Nancy Moscone Brenda Mullins Donna Murrell Connie Lyle O’Brien Joanne Odato-Staeb

Lance & Suzette Olson Joel Parisy JungSook Park Hyun-Sook Park Robyn Patterson Germaine Payne Kathryn PeckhamHardin Savannah Pegram Elizabeth Perkins Amy Peterson Jody Pirtle David Pitonyak Cathy L. Pratt Sally Prouty Kimberly Purdy Carol Quirk Debbie Reed Rodney Reynolds Curtis Richards Andy & Sherry Riethmaier Matt & Nina Riethmaier Jonathan & Darlene Riethmaier Pamela Roberts Claudia & Donald Roberts Shirley Rodriguez Jane Rohan Lyle Romer Mary Romer Rita Rubin Nicholas Runyan Diane Ryndak Thomas & Kim Saul Susie Schaefer Steve Schreiber Jean Searle Randy Seevers Laurel A Semsch Scott Shepard

Don Shouse Stephanie Shuskey Miriam Siegel George Simon George HS Singer Karen Smith Martha Snell R Snowder Paul R Sobel Lynne Sommerstein Stephen & Brenda Sprague Melinda Stevens Perta Stockhaus Gregg Stuart Laura Sturtevant Lorraine Sylvester Kayla Takeuchi Judy Thibadeau Stephanie Thomas Barbara Trader Jean Trainor Dina Traniello Bobbie Vaughn Julie WeissmanSteinbaugh David Westling Sharon Paige Whitaker Cheryl White Nikole Whitehead Kathleen Wigfield Maurita Williams Nathan Wilson Park Ju Yeon Charles Zawacki Karen Zimbrich Cashimawo Akpiri Sadiatou Ashford Uma Ashok Dee Banta Robin Blount Crystal Bulner William Butler

TASH Connections  Fall 2011  www.tash.org


TASH Gratefully Acknowledges the Following Donations of Time and Money Muhama Celestin Leyna Crenshaw I’lexius Culpepper Cillaty Dabott Mousumi Dutta Nyono Elunge Humphrey Eze Deborah Harnishfeger Susan Hickey Aisha Holmes Julie Irabor Judith Irabor Shanice Johnson Julie Kegley Jeffrey Lee

Barbara McKenzie Kowana McKinney Baohanh Nguyen Sharron PaigeWhitaker Amy Papacek Darlene Riethmaier Lina Scharff Jean Searle Linda Simmons Nicole Smith Nicholas Stargell Henrietta StargellBellows Allison Stevenson Simeon Teopaco

Jennifer Thomas Deanna Thompson Nancy Ward Patricia Williams Cheri Mitchell Bernard Baker Terasa Coleman Melanie Nellis Sydne Ora Jenny Puestow Stacey Ramirez Robin Blount Jennifer Falk Dottie Adams Connie Lyle O’Brien

Mark Johnson Caitlin Childs Elizabeth Labbe-Webb Pat Nobbie Linda Pogue Ethney Johnson Sharron PaigeWhitaker Maria Wandera Donna Kosicki Joan McCarty Kowana McKinney Mark Crenshaw Marnie Will Aarti Saghal Bethany Stevens

Wendy Stewart Debi Tucker Jason Todd Cavin LaToshia Delain Stephens Daniel Bernard Crimmins Total Living Concept Metropolitan Community Builders National Down Syndrome Society National Fragile X Foundation National Autism Association

Donʼt Keep TASH a Secret. As a valued member of TASH, you can impact our

Visit www.tash.org/share where you can:

community by sharing your experiences with friends, family, colleagues and others who have an interest in

• Download a membership application

equity, opportunity and inclusion for individuals with

• Share names of people and TASH will reach out to

significant disabilities.

them directly • Find information that will help you share the benefits

Help us SHARE TASH by telling others about the benefits

of TASH membership with others

of membership, and the impact we can have in our communities and around the world by working together.

For your support, weʼll announce special prizes for those

We invite you to participate in this membership campaign

who participate in the SHARE TASH campaign. Thank you

by reaching out to those who share your passion for

for helping us SHARE TASH.

creating real, positive and lasting change in the world. TASH Connections  Fall 2011  www.tash.org

www.tash.org/share

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Membership Application Effective June 15, 2012 TNew Membership TMembership Renewal

Referred by ____________________________________________

Member Type: TIndividual TOrganization (org. member name): __________________________________________________ First Name: ____________________________ Last Name: ____________________________ Address: ____________________________________________________________________ City/State/ZIP: _______________________________________________________________ Country: ______________ Phone 1: ________________________________ TPrimary

E-mail 1: ________________________________ TPrimary

Phone 2: ________________________________ TPrimary

E-mail 2: ________________________________ TPrimary

(Organization Members Only) Are you the primary contact? TYes TNo Primary Contact Name: ________________________________________________________ Phone: ________________________________ E-mail: ________________________________

Membership Level TASH offers membership at a variety of levels. Please review the details below and choose the membership level that is appropriate for you. Individual and organizational memberships are available. Membership is valid for a 12 month term. A complete summary of member benefits can be found at www.tash.org/membership. Basic $30

Standard $75

Premium $150

Research and Practice for Persons with Severe Disabilities, the official TASH research journal (print copy)

Student * $45

X

Research and Practice for Persons with Severe Disabilities, (online access to current and archived issues)

Small Org $250

Large Org $350

1 COPY

1 COPY

X

X

X

X

X

Connections, the quarterly magazine written by and for TASH members (includes current and archived issues)

X

X

X

X

X

X

TASH in Action bi-weekly e-newsletter

X

X

X

X

X

X

Training discounts for webinars, publications and other offerings

X

X

X

X

3 STAFF

5 STAFF

Reduced registration rates for TASH Conference and events

X

X

X

X

3 STAFF

5 STAFF

Affiliation with a TASH Chapter

X

X

X

X

X

X

Advocacy Alerts & Updates

X

X

X

X

X

X

TSelect

TSelect

TSelect

TSelect

TSelect

TSelect

------------>

*Student members are required to identify university: _____________________________________________________________ _

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-Continued on Next Page-

TASH Connections ď ˇ Fall 2011 ď ˇ www.tash.org


Demographic Information (optional) Which of the following best describes you? (select all that apply) TPerson with Disability

TFamily Member

TStudent

TProfessor/Researcher

TAdult Service Provider/Related ServicesTSpecial/General Educator

TEarly Intervention

TGovt/Legal/Public Policy

TOther ___________________________________ What is your race or ethnicity? (select all that apply) TAmerican Indian or Alaska Native TWhite/Caucasian

TAsian

THispanic/Latino

TNative Hawaiian or Pacific Islander

TBlack or African American

TOther ___________________________________

Are you affiliated with a university? If so, please specify: ___________________________________________________________ Please indicate your areas of interest (select all that apply) TCommunity Living

TEarly Childhood

TEmployment/Transition

TEducation

TSelf-Advocacy

TPublic Policy

TPositive Behavioral Interventions and Supports

TInternational Issues

TCultural Competency/Diversity

THuman Rights/Social Justice

Payment Information TCheck (make payable to TASH)

Credit Card (select card type) TAmerican Express TMasterCard

TVisa 









TPurchase Order P.O. #: ______________

TDiscover

(send copy with membership form)

Card #: __________________________________________ Expiration: ______________ Name on Card: __________________________________________ CVV: ______________ Authorized Signature: __________________________________________ Would you like to make a tax-deductible donation to TASH? T$10

T$25T$50

T$100

T$ ______

Total Payment (add membership total and donation, if applicable) $: ______________ Please submit this membership form via mail, fax or e-mail. With questions, contact (202) 540-9020. TASH 1001 Connecticut Ave, NW, Suite 235

Fax (202) 540-9019

Washington, DC 20036

E-mail info@tash.org

www.tash.org to learn more about TASH www.tash.org/member to log in to the membership portal www.tash.org/membership for an overview of member benefits

TASH Connections ď ˇ Fall 2011 ď ˇ www.tash.org

49


Connections

Equity, Opportunity and Inclusion for People with Disabilities since 1975 TASH is an international leader in disability advocacy. Founded in 1975, TASH advocates for human rights and inclusion for people with significant disabilities and support needs – those most vulnerable to segregation, abuse, neglect and institutionalization. TASH works to advance inclusive communities through advocacy, research, professional development, policy, and information and resources for parents, families and self-advocates. The inclusive practices TASH validates through research have been shown to improve outcomes for all people.

Policy Statement It is TASH’s mission to eliminate physical and social obstacles that prevent equity, diversity and quality of life for children and adults with disabilities. Items in this newsletter do not necessarily reflect attitudes held by individual members of the Association as a whole. TASH reserves the right to exercise editorial judgment in selection of materials. All contributors and advertisers are asked to abide by the TASH policy on the use of people-first language that emphasizes the humanity of people with disabilities. Terms such as “the mentally retarded,” “autistic children,” and “disabled individuals” refer to characteristics of individuals, not to individuals themselves. Terms such as “people with mental retardation,” “children with autism,” and “individuals who have disabilities” should be used. The appearance of an advertisement for a product or service does not imply TASH endorsement. For a copy of TASH’s publishing and advertising policy, please visit www.tash.org.

 Individualized, quality supports in place of congregate and

segregated settings and services  Legislation, litigation and public policy consistent with the

mission and vision of TASH The focus of TASH is supporting those people with significant disabilities and support needs who are most at risk for being excluded from society; perceived by traditional service systems as most challenging; most likely to have their rights abridged; most likely to be at risk for living, working, playing and learning in segregated environments; least likely to have the tools and opportunities necessary to advocate on their behalf; and are most likely to need ongoing, individualized supports to participate in inclusive communities and enjoy a quality of life similar to that available to all people. TASH has a vision of a world in which people with disabilities are included and fully participating members of their communities, with no obstacles preventing equity, diversity and quality of life. TASH envisions communities in which no one is segregated and everyone belongs. This vision will be realized when:  All individuals have a home, recreation, learning and

employment opportunities  All children and youth are fully included in their

neighborhood schools  There are no institutions  Higher education is accessible for all  Policy makers and administrators understand the struggles of

TASH Mission & Vision As a leader in disability advocacy for more than 35 years, the mission of TASH is to promote the full inclusion and participation of children and adults with significant disabilities in every aspect of their community, and to eliminate the social injustices that diminish human rights. These things are accomplished through collaboration among self-advocates, families, professionals, policy-makers, advocates and many others who seek to promote equity, opportunity and inclusion. Together, this mission is realized through:  Advocacy for equity, opportunities, social justice and human

rights  Education of the public, government officials, community

leaders and service providers  Research that translates excellence to practice

50

people with disabilities and plan – through laws, policies and regulations – for their active participation in all aspects of life  All individuals have a way to communicate and their

communities are flexible in communicating in alternate ways that support full participation  Injustices and inequities in private and public sectors are

eradicated  Practices for teaching, supporting and providing services to

people with disabilities are based on current, evidence-based strategies that promote high quality and full participation in all aspects of life  All individuals with disabilities enjoy individualized supports

and a quality of life similar to that available to all people  All individuals with disabilities have the tools and

opportunities to advocate on their behalf

TASH Connections  Fall 2011  www.tash.org


TASH Newsletter: Volume 37, Issue 4, Fall 2011  

At the Intersection of Race and Disability: What Do We Know and What Do We Need to Do?

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