Objectives and Need for Assistance. Overview of the Institute on Human Development and Disability The Institute on Human

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1 Our Mission: IHDD works with others to create opportunities that will improve the quality of life for people with disabilities and their families. IHDD advances the understanding of the ability of all people through education, research and public service. What We Believe: Individuals, families and communities are unique and have inherent value. We are all strengthened when that uniqueness is recognized, respected and nurtured. Individuals and families have the right to information, their own definition of needed supports, options for choice, and the right to exercise control over their lives. Individuals and families need to be connected to their communities in ways that enhance their own roots and history, and strengthen the capacity of communities to respond. Families and individuals have distinct values, opinions and customs that arise from the diverse cultures to which they belong. To ensure that all people can participate and benefit equally, all services should reflect and support individual and community diversity. Individuals have the right to define their own needs, to have opportunities for growth and selfdetermination, to dream and to make mistakes, and to define their own quality of life. Individuals have the right to equal opportunities to meet their own basic needs, and the right to participate in all aspects of community life free from attitudinal and physical barriers. While family is defined in many ways, its essence is its unity. The family unit is to be recognized as the primary focus of support, commitment, and love. Communities have the responsibility to provide equal opportunity for participation in all aspects of community life. Communities have the capacity to meet human need and to foster opportunities for awareness, relationships, and action that strengthen independence, interdependence and community resourcefulness. All people have gifts to bring to community life. Objectives and Need for Assistance Overview of the Institute on Human Development and Disability The Institute on Human Development and Disability (IHDD), a Center for Excellence in Developmental Disabilities Education, Research, and Service, is located in Athens at The University of Georgia (UGA), the state's oldest (chartered in 1875), most comprehensive educational institution. As the first land-grant institution in the nation and the capstone of the University System of Georgia, its teaching, research, and service missions focus enormous resources to improve the quality of life throughout Georgia and the nation. IHDD can be envisioned as stretching across Georgia, with projects and collaborative agreements touching every corner of the state. Faculty and staff are located on the Athens campus and in offices in Atlanta and Tifton (South Georgia). Continuously funded since 1969, IHDD has a proud history of being a strong, positive force for HHS-2012-ACF ADD-DD IHDD/UCEDD

2 change, working with self-advocates, families, and others to improve the quality of life for citizens who experience developmental disabilities. IHDD operates no clinics or other facility-based programs. A Snapshot of Georgia Georgia, the largest state east of the Mississippi River, is composed of 159 counties and 180 school systems. Within Georgia exists vast differences in income, topography, and population. Georgia has one large urban area, Atlanta, and nine mid-sized cities. The rest of Georgia consists of small towns and rural areas. Georgia is the 4th fastest growing and the 10th most populous state with a population of 9,815,210 (2010 Census). Growth is concentrated in the urban, suburban, and north Georgia mountain areas. Areas of rural Georgia are experiencing a population decrease. Nonetheless, agriculture is a major part of Georgia s economy, contributing more than $57 billion annually. Georgia s 2.95 million African-American citizens comprise 30.5% of the state s population; 32% of Georgia s children are African American. The state has seen great growth in its Hispanic population, from 1.68%, or 109,000 people in 1990, to 8.8%, or 865,689 people in 2010; 13.5% of Georgia s children are Hispanic. Nine percent of Georgians are foreign born; 19% of Georgia s children live in immigrant families. Georgia ranks 42 nd nationally in children s overall well-being (2010 KIDS COUNT). Georgia has the 12 th highest poverty rate in the nation; approximately 18% of Georgia s citizens live in poverty (2010 census). Poverty rates for children are even bleaker; 26% of children under age 5 live in poverty, as do 36% of African American children and 41% of Hispanic children (Kids Count, 2010). Among states, Georgia ranks 5 th highest in low weight births (9.4/100), 6 th in infant mortality (8.1 deaths/1,000 live births), 13 th in the teen birth rate (48/1000), and 8 th in children living with single parents (38%) (2010 KIDS COUNT). Georgia has one of the highest rates of obesity in the nation; 65% of adults and 40% of children are overweight or obese. Obesity rates for adults with disabilities are 58% higher than for adults without HHS-2012-ACF ADD-DD IHDD/UCEDD

3 disabilities. For children with disabilities, obesity rates are 38% higher than for children without disabilities. In the U.S., annual health care costs due to obesity and disability have been estimated at $44 billion. Approximately 165,239 Georgians have a developmental disability (GCDD, 2011). Strong political pressure to keep taxes low inhibits growth of human services. Georgia has the 49 th lowest per capita rate of state taxation (GPBI, 2011). The State of the States in Developmental Disabilities (Braddock et al., 2011) ranks Georgia 46 th nationally in the proportion of the state s total personal income that is devoted to financing community services for people with disabilities and 47 th in utilization of community residential services by individuals with DD. With these critical demographics and economic factors in mind, IHDD strives to improve the state s capacity to plan, provide services, and assist Georgians in developing a better quality of life. In the face of great challenges, it is critically important to develop clear priorities for action. The CAC s Role in Development of the 5-Year Plan. In late 2010, IHDD faculty and staff presented to the CAC a summary of accomplishments of the current plan. This served as an opportunity for CAC members to review and consider the work done to date regarding addressing the needs of Georgians with developmental disabilities and their families. This summarization also provided opportunities for CAC members to start formulating ideas regarding the work of IHDD for the next five years. In June 2011, a Strategic Planning Retreat was held with CAC members. This interactive meeting created opportunities for participants to share ideas about existing IHDD projects and to identify more concretely unmet needs and conceivable future directions. This retreat provided additional opportunities for CAC members to provide input regarding areas of need. Initial goals and objectives pertaining to the IHDD core functions and areas of emphasis were established. In January 2012, initial goals and objectives were reviewed and commented on by the CAC. The CAC had opportunities to refine goals and objectives as well as identify additional needs and objectives. Between December 2011 and April 2012, IHDD staff and faculty convened to ensure that the feedback from the CAC members was incorporated into the new 5-year plan. HHS-2012-ACF ADD-DD IHDD/UCEDD

4 GCDD/GAO/CLD State Plans: The DD Network in Georgia uses the Governor s Council on Developmental Disabilities (GCDD) State Plan as a foundation for strategic planning. GCDD holds multiple statewide forums each year to learn about community needs and priorities. Overlap between the GCDD State Plan and the IHDD plan occurs in all of the Council s priority areas: Real Careers, Real Homes, Real Learning, Real Supports, and Real Communities. The set of Milledgeville activities described later in this application includes community building activities that will be conducted in collaboration with the Real Communities initiative of GCDD (see support letter from GCDD Executive Director). The IHDD Director serves as a member of GCDD and was actively involved in developing the state plan. In developing our strategic plan, we studied the plans of the Georgia Advocacy Office (GAO) and the Center for Leadership in Disability (CLD). IHDD is proposing activities that directly relate to all three of GAO s priority areas and to 5 of their 6 objectives. CLD s plan has numerous areas of overlap with IHDD priorities, especially those priorities undertaken jointly by the DD Network (described later in this application). As would be expected for two UCEDDs in the same state, CLD and IHDD are also addressing different priorities in our respective plans. IHDD Goal Areas Based on Identified Needs Goal 1. A Job, Not Poverty: Creating equal opportunities so people with disabilities can reach their full potential for employment and contribution to their communities (DD Act Area of Emphasis: EMPLOYMENT). Adults with disabilities are over three times more likely than other adults to live in poverty (26% vs. 9%; Burkhauser & Houtenville, 2006). Over 70% of SSI beneficiaries (age 18-64) are poor (Livermore, 2009). The unemployment rate for adults with DD is within the range of 75% to 92% (Rogan, Mank, & Dileo, 2003). In a survey done by the Office of Disability Employment Policy, only 13.6% of employers reported they actively recruited people with disabilities. Many employers think of hiring people with disabilities as a charitable activity rather than a management decision that makes sound business sense. HHS-2012-ACF ADD-DD IHDD/UCEDD

5 Most (76%) Georgians with developmental disabilities spend their days in facility-based non-work settings. A Medicaid Buy-In, implemented in 2008, has been underutilized, both because people are not aware of the program and because of the low unearned income ceiling ($699). In 2008, only 2% of those served in Georgia VR received supported employment services. Georgia ranks 42 nd in community-based employment outcomes for people with development disabilities, with Supported Employment Medicaid expenditures down nearly 8 million dollars since Georgia received a grade of D for employment supports in 2009 from the National Alliance on Mental Illness. In 2008, only 4% of Georgia s 189,363 SSI beneficiaries were employed. Last year 65%- 85% of youth with disabilities graduated from high school in Georgia without employment in their future. Assistive technology can play a vital role in competitive employment. Over 600,000 Georgians are estimated to need AT (Tools for Life, 2010). Yet, a fraction of these citizens receive the needed technology. When people are asked what they d most like in services, nearly 70% report that they desire a job. Clearly, employment systems are not delivering what most people want. IHDD supports self-advocates in the elimination of sub-minimum wages and embraces the position outlined by Self Advocates Becoming Empowered (SABE) to close sheltered workshops and end the subminimum wage. We have been prepared enough. Get us real jobs. Close sheltered workshops. Our CAC recommended that IHDD reach out to small businesses. There are only 17,000 businesses in the US with more than 500 employees. There are over 28 million small businesses, the majority of which have no Human Resources Department or even job descriptions. Fewer barriers to employment can mean easier negotiations for people with complex support needs (Griffin-Hammis, 2010). Too many Georgians risk losing their farms because of disability. National Safety Council data in 1995 show agriculture as having 12.6 fatalities per 100,000 workers and over 150,000 disabling injuries. Farm youth are at risk of injuries causing lifelong disability. Injury and death rates in the Southern U.S. are particularly high with 40% of farm youth fatalities (Adekoya and Pratt, 2001) and 30% of injuries reported HHS-2012-ACF ADD-DD IHDD/UCEDD

6 nationwide (NASS, 2001). Prevention programs can reduce injury-related disabilities in farm youth; assistive technology can allow farmers with disabilities to remain economically viable in their businesses. The 2009 unemployment rate for Iraq and Afghanistan veterans hit 21.1 percent (Associated Press, March 2010). As of October 2011, 1.9 million veterans had deployed for the wars since Sept. 11, One-third of returning veterans have a serious mental or physical disability, including brain injuries (Archives of Internal Medicine, 2007). Veterans often feel isolated, not relating to community members who have never experienced the horrors of combat. Many return to communities where employment supports are lacking and service providers are pessimistic about their ability to return to work. Goal 2. Friends and Places: Building relationships through ordinary living and active participation with family, friends, and community (DD Act Areas of Emphasis: OTHER SERVICES - FORMAL AND INFORMAL COMMUNITY SUPPORTS). Historically, people with disabilities have been removed from their families and communities, confined to segregated programs and institutions against their will. Even as people return to community life, many experience loneliness and isolation. Often their only companions are their family members and paid support staff. Out of 10,000 people receiving Medicaid waiver services in Georgia, only 1,000 are selfdirecting their services. This means that the majority of people are not able to choose the types of supports they need to form friendships and to thrive in places in their community. Delmarva, the quality assurance organization that contracts with disability services in Georgia, recently evaluated Individual Service Plans, finding that only 7% of the people had one goal related to assuming a valued social role. Bold efforts are needed to Join people, who are at risk of invisibility because of substantial disability and their families at the edge of possibility, to create the social innovations necessary for our communities to benefit from their contributions (John O Brien, 2011 TASH Conference). Our intention in Friends and Places is to support people to fundamentally shift their identity in their community from consumer to contributor and citizen. HHS-2012-ACF ADD-DD IHDD/UCEDD

7 Friendships and community connections are most effective way to protect people from abuse and neglect; when people care, people act. We are committed to bringing the following question to communities across Georgia, Why and what keeps people apart? This goal revolves around the theme of intentional invitations for community members to be in conversation, discover what they have in common, recognize each other s gifts, and create opportunities for people living on the edge to be visible as contributing members. Intentional conversations begin by being introduced (or introducing oneself) by one s gifts and raising the question What does your community need from you? Goal 3. Families: Building confidence and competence of families to support and advocate for their family member with a disability ( DD Act Areas of Emphasis: EDUCATION AND EARLY INTERVENTION, OTHER SERVICES FAMILY SUPPORT). Most people with disabilities live with their families. Although family care serves about 6 times as many people as are served by formal residential supports, few service dollars are directed toward families. Georgia lacks a comprehensive system of family support, ranking 50th in the US for spending for family supports. Lack of family support contributes to the placement of youth in institutions, nursing homes, and other residential facilities. According to Unlock the Waiting List, over 6,400 Georgians with DD are on a waiting list for services. IHDD research following youth who moved from the River s Crossing ICFMR when it closed in 1996 indicated that almost all families that placed their children in facilities did so, not because they wanted to, but because they did not have access to needed supports. Our research further indicates that many of the supports for families in Georgia that were lacking 20+ years ago are still lacking today. In 2010, Babies Can t Wait, Georgia s early intervention program served 8,687 children birth to 3 years old. Early intervention services are designed to be family-focused, but only a small proportion of early intervention goals focus on family outcomes (Stoneman & Rugg, 2010). At the other end of the lifespan, almost 19,500 people with developmental disabilities are estimated to live with caregivers over the age of HHS-2012-ACF ADD-DD IHDD/UCEDD

8 60 (Braddock et al., 2011); this group is projected to nearly double in size to by 2030 (Heller & Factor, 2004). It is projected that the Medicaid, public health, and transportation expenditures for Georgia s seniors will rise from 11% of total state revenues in 2010 to 21.0% in There is concern that the growth in the aging population will outstrip Georgia s ability to financially support the needs of these individuals. Families try to remain intact as long as possible, but the onset of age-related disabilities and health conditions often lead to a point where care giving is no longer possible. Many of these families remain invisible until failing health or caregiver death brings them to the attention of the service system at a time of family crisis. Goal 4. Human Rights: Promoting the recognition of people with disabilities as equal citizens with rights to a full and ordinary life, without fear of exclusion or abuse (DD Act Area of Emphasis: QUALITY ASSURANCE). Like many other states, the history of services in Georgia has been dominated by a model of segregation and congregation. A U.S. Department of Justice (DOJ) v. Georgia Settlement Agreement, signed in October 2010, is creating dramatic change in the state. The DOJ Settlement Agreement requires Georgia to establish an array of services and supports for people with developmental disabilities and those with mental illness. For the fiscal year 2012, the amount of money appropriated by the Legislature topped $70 million dollars, even as other state budgets were seriously cut. This settlement requires the following: Medicaid waivers to move all people out of state hospitals by July 1, 2015 (150 per year) Medicaid waivers to prevent institutionalization (100 per year) 3. Cease all admissions to state hospitals by July 1, Georgia will serve individuals receiving home and community based waivers in their own home or family home consistent with each individual s informed choice 5. Georgia will provide family supports to 2,350 families of individuals with DD by July 1, Crisis services 6 mobile crisis teams by July 1, Establish 12 crisis respite homes by July 14, 2012 to provide respite services 8. Provide individuals receiving home and community based waivers with support coordination 9. After July 1, 2015 all people with DD must be served in the most integrated setting HHS-2012-ACF ADD-DD IHDD/UCEDD