2.1. Recommendations to Improve Early Intervention and Education Opportunities

     2.1.1. Stronger Cross-Agency Collaboration Recommendations

     2.1.2. Improved Educational Outcomes Recommendations

2.2. Ensuring High Expectations and Opportunities for People with ID/DD As They Transition from Youth to Adulthood

     2.2.1. Postsecondary Education As a Tool for Effective Transition

     2.2.2. System Change: Transitioning Toward Excellence in Achievement and Mobility

     2.2.3. System Change Through Reauthorization of the Workforce Investment Act Recommendations

2.3. Recommendations to Improve Employment Outcomes

     2.3.1. Employment First: Integrated Employment As the Desired Outcome Recommendation

     2.3.2. Reconceptualizing Supported Employment Services Recommendations

     2.3.3. Promoting Employment in the Context of Medicaid Reform Recommendations

2.4. Ongoing Supports Over the Lifespan

     2.4.1. Defining "Community" to Promote Inclusion and Full Participation

     2.4.2. Realigning Public Resources to Prioritize Home and Community Based Services

     2.4.3. Transformational Change in the Context of Medicaid Reform Recommendations

The DD Act outlines eight specific areas of emphasis on which the core components of the DD network must focus: quality assurance, education and early intervention, child care, health, employment, housing, transportation, and recreation. In response to demands and issues that have arisen since the statute's 2000 reauthorization, NCD recommends that the categories be consolidated and that ADD and the state DD networks be allowed to focus more holistically on comprehensive priority areas related to addressing the needs of people with ID/DD. NCD recommends that the areas of emphasis be consolidated into four core areas that cover the lifespan from infancy through aging (figure 3):

1. Early intervention and education
2. Transition from youth to adulthood
3. Competitive, integrated employment
4. Ongoing long-term supports, including but not limited to sustained education, training, and employment; health and wellness; housing; transportation; and recreation.

Figure 3. Across-the-Lifespan Policy Framework

Source: This framework and figure was developed by the author of this paper solely for use in this NCD publication.

Any reauthorization effort should consider how to embed the principles of the DD Act in a meaningful way into federal programs and activities related to these four core areas. For example, the requirement in the DD Act that "all programs for individuals with developmental disabilities should meet standards that are designed to ensure the most favorable outcome for those served" should be expanded to provide specific criteria for each of the federal systems tied to these four core areas.

This section identifies key opportunities to develop a cohesive, comprehensive federal policy across various federal agencies and legislative statutes in each of these four areas to ensure a consistent, unified federal commitment to realizing the goals and underlying principles of the Developmental Disabilities Assistance and Bill of Rights Act. The recommendations are not exhaustive; the intent is to identify emerging opportunities over the next two to five years for a coordinated federal response to address the needs of citizens with ID/DD. The emphasis is on cross-agency collaboration and coordination of federal objectives and resources, using strategic tactics deployed through both regulatory and legislative vehicles.

2.1. Recommendations to Improve Early Intervention and Education Opportunities

2.1.1. Stronger Cross-Agency Collaboration

Early intervention and access to education are critical areas of federal focus, shared by the Centers for Disease Control and Prevention (CDC), the Department of Education, ACF and ADD. While interest in early intervention services has skyrocketed among families, federal funding for such activities has not kept pace with demand.[ 4] Many children with behavioral or developmental disabilities are missing out on vital opportunities for early detection and intervention.[ 5] According to CDC, 17 percent of children in the United States have a developmental or behavioral disability such as autism, intellectual disabilities, or attention deficit/hyperactivity disorder. However, less than 50 percent of these children are identified as having a problem before they start school, by which time significant delays may have occurred and opportunities for treatment been missed.[ 6]

The Individuals with Disabilities Education Act (IDEA) Amendments of 1990 to 1997 require states to provide early identification and services to the following infants and toddlers:

• Those with developmental delays.
• Those with established conditions associated with developmental delays.
• At the state's option, children at risk for developmental delays.

States that do not serve the at-risk population are encouraged to track and monitor these children's development, so they can be referred in the future, if necessary. IDEA also mandates that states refer children, free of charge, for a comprehensive, multidisciplinary evaluation by a team that, with the family, will determine which services are needed for the child (via the Individualized Family Service Plan). Furthermore, it requires states to implement coordinated, family-centered, and culturally competent community-based systems of care to provide early intervention services for children identified as having developmental problems.

ADD can and should work across public health and education systems as an advocate for greater coordination of existing developmental screening and early intervention activities. Strategies to ensure a clearer connectivity among ADD, the state and federal ID/DD infrastructure, and other state and federal agencies to address early intervention needs of children with ID/DD and their families are critically important.

2.1.2. Improved Educational Outcomes

Among the strongest predictors of postschool employment success for young people is whether they earn a diploma. Only 34 percent of students with intellectual disabilities, 40 percent of students with multiple disabilities, and 56 percent of students with autism graduated from high school with a regular high school diploma during the 2007–2008 school year (U.S. Department of Education, 2010). Among all students, those with the most significant cognitive disabilities are the least likely to graduate with a regular high school diploma (ADD, 2011, p. 3).

Federal public policy and resources should reflect a stronger commitment to the implementation of fully inclusive education practices, which benefit all students, including students with ID/DD. Public policies should promote students with special needs as part of the general education population and not as a segregated subpopulation. Overwhelming evidence demonstrates that fully inclusive schools—in which students with special needs are engaged in the general educational setting and have access to the general curriculum—have higher academic performance outcomes for students with disabilities as well as their peers who do not have disabilities (Wagner et al., 2006). In contrast, placing students in segregated classrooms according to diagnosis or special needs leads to detrimental outcomes (Freeman, SFN, 2000).

Public education should have the highest expectations for all students and promote full access to a free and appropriate public education in the most inclusive setting possible. To realize this vision, ADD must assume a stronger leadership role in public education policy by working directly with the Department of Education on regulatory guidance, policy framing, and implementation of various legislative statutes that affect students with ID/DD. The reauthorization of the DD Act, IDEA, and the Elementary and Secondary Education Act (ESEA) should include provisions that affirm a connective role and shared responsibility between ADD and the Department of Education to coordinate on policy issues that affect students with ID/DD.

2.2. Ensuring High Expectations and Opportunities for People with ID/DD As They Transition from Youth to Adulthood

Today's youth with ID/DD have expectations of future employment, yet continue to struggle to access competitive integrated employment. Data from the National Longitudinal Transition Study-2 (NLTS2) show that 86 percent of students with disabilities who are of transition age definitely believe that they will work in their adult years. When adding in those that feel they will probably work, that percentage moves to 96 percent (Kiernan, 2010). Even with a diploma, youth with intellectual disabilities demonstrate the lowest rate of paid employment among students with disabilities (29.8 percent), 1 to 4 years after exiting high school (Newman et al, 2010). In one recent study of 338 high school graduates with developmental disabilities, only 14.2 percent were employed in positions paying at least minimum wage (Simonsen, 2010) (ADD, 2011, p. 3).

Educational and vocational guidance in preparation for adulthood is critical for all youth, including those who have significant disabilities. The discussion of transition should begin as early in a person's life as possible. Evidence-based research has conclusively documented that people with disabilities who were educated in inclusive settings, exposed to work experience and career exploration, and participated in a paid work experience while in school had better postsecondary and employment outcomes (Cimera, 2008).

When state education, vocational rehabilitation, workforce development, Medicaid, and other public agencies work closely together to support and promote the growth and development of youth with significant disabilities, these youth benefit from the synergistic coordination of supports and are able to achieve better outcomes. To ensure effective coordination among these entities, systemic changes must allow for flexible braiding of resources and the entities must agree that publicly financed supports should focus on enabling youth to achieve optimal outcomes associated with postsecondary education, integrated employment, independence, self-sufficiency, and economic advancement.

Of all students with disabilities, those with ID/DD have the poorest postschool outcomes (Hart, Grigal, and Weir, 2010). Until the past decade, the option of attending college—especially the opportunity to participate in typical coursework—was rarely available to high school students with ID/DD. The usual options for students with ID/DD, especially those past the age of 18, had previously been limited to segregated life skills or community-based transition programs.

2.2.1. Postsecondary Education As a Tool for Effective Transition

The number of post-secondary education (PSE) programs designed for students with ID/DD has increased exponentially in recent years, and today there are approximately 250 PSE programs for students with intellectual disabilities in 37 states. 149 of these programs responded to the 2010 National Survey of Inclusive PSE programs conducted by the Institute for Community Inclusion (ICI). Of these respondents, 50% are four-year colleges or universities, 40% are two-year colleges, and 10% are considered trade/technical schools.[ 9] Forty-five percent of respondents indicated that they served only adults with ID, 26% served dually enrolled students (meaning students who were enrolled in both high school and college simultaneously), and 29% served both of these groups. The 2010 survey responses indicated that programs vary considerably in terms of level of student integration, access to typical courses, and disability services. For example, 49% indicated that students did have person-centered planning. It is difficult to fully evaluate the effectiveness of the programs, as only 52% of the PSE programs indicate that they collect outcome data.

Inclusive PSE options have great potential to improve transition outcomes for youth with ID/DD. Of all disability groups, youth with intellectual disabilities have the lowest rates of education, work, and preparation for work after high school. Nationally, interest is growing in postsecondary education as a way to improve employment and other key life areas for people with ID/DD, as those who participate in PSE tend to obtain better jobs with higher wages. Research has demonstrated that comprehensive transition and postsecondary programs have had a positive effect on student rates of employment, wages, social networks, and self-determination skills (Guenette, 2003). Recent studies indicate that the strengths of this model of service delivery are employment training and community participation—in one state, 87 percent of students were employed or in training positions, and 100 percent were involved in integrated community activities (Zafft, Hart, and Zimbrich, 2004). Another study found that participation in PSE correlated positively with competitive and independent employment (Zafft et al., 2004). This data indicates that these programs are offering new hope and leading to greater employment, independence, and community living for students with intellectual disabilities.

Vocational rehabilitation (VR) agencies can also play an important role by supporting the inclusion of youth with ID/DD in postsecondary programs and including this participation in the student's Individualized Plan for Employment (IPE). The following information from ThinkCollege.net demonstrates the positive effect PSE is having on the attainment of integrated employment by youth with significant disabilities.[ 10]

• In 2007, of the 36,154 youth with ID/DD between the ages of 16–26 years who completed vocational rehabilitation services, 1,223 (3.4%) participated in some type of PSE program and 537 (1.5%) successfully completed a nondegree program, associate degree, vocational/technical certificate, bachelor's degree, or graduate degree program. Of the 537 people who attained higher education as a component of receiving vocational rehabilitation services, 312 (or approximately (58%) went onto competitive employment, earning an average of $338 per week. The data shows that attending PSE resulted in a 48 percent employment rate and average wages of $316 a week. In contrast, youth who did not receive PSE services but left VR services to take a job (32%) had an average weekly income of $195.
• Data from the national vocational rehabilitation database (RSA 911) shows that youth with ID who participated in PSE were 26 percent more likely to leave VR services with a paid job, as compared to youth who did not participate in PSE, and they earned an average of 73 percent more per week. However, despite positive employment outcomes for youth with ID who receive PSE, the percentage of youth who receive these services as part of their IPE is low.
• Further study is needed on the impact of PSE on employment outcomes for people with ID/DD, especially with regard to the role of vocational rehabilitation. Lifelong learning promotes academic, professional, and personal development, and helps all citizens enjoy lives of dignity and purpose.

Initial federal investments to support the continued expansion and evolution of PSE programs targeting students with ID/DD must be sustained and leveraged with coordinated VR resources. The availability of internships, apprenticeships, and skilled training through PSE programs drives significant positive outcomes for students with ID/DD by broadening their exposure to a wide array of vocational and professional opportunities in the community.

The amendments to the Higher Education Opportunity Act (HEOA) that allow non-degree-seeking students with ID/DD to pursue work-study and federal grant assistance, have greatly enhanced the ability of students with ID/DD to access PSE programs. Unfortunately, the process that PSE programs must complete in order to receive approval for offering such assistance is quite complex. Therefore only six PSE programs have been authorized to provide federal student aid packages for non-degree-seeking ID/DD students. Steps must be taken to simplify this process, and to encourage more PSE programs established for ID/DD students to take advantage of the federal student aid provisions authorized in HEOA.

2.2.2. System Change: Transitioning Toward Excellence in Achievement and Mobility

In February 2011, to address some of the systemic barriers and support the transition of youth with ID/DD to adulthood, Rep. Gregg Harper (R-MS) introduced a trio of bills known as the Transitioning Toward Excellence in Achievement and Mobility (TEAM) legislation. The legislation—which includes the TEAM-Education Act (H.R. 602), the TEAM-Empowerment Act (H.R. 603), and the TEAM-Employment Act (H.R. 604)—was developed after 18 months of discussions with a group of national advisors, including self-advocates with ID/DD; parents and family advocates; providers of transition services; practitioners currently working in publicly financed systems in the areas of education, VR, and Medicaid systems; and researchers. The TEAM legislation is the first comprehensive legislative package aimed at cross-system transformation and alignment of planning processes, objectives, funding streams, desired outcomes, and performance measures to improve transition outcomes for youth with ID/DD. The legislation seeks to strengthen accountability, clarify expectations, expand flexibility, and align systems to ensure that publicly funded assistance is used effectively to provide young people with a significant disability with the opportunity, encouragement, and support to pursue a postsecondary education, become gainfully employed in an integrated setting, and contribute to and engage in meaningful ways in typical community settings after they leave high school.

• The TEAM-Education Act (H.R. 602) would amend the Individuals with Disabilities Education Act by requiring that transition components be included in IEPs for all IDEA-eligible students at the age of 14, expanding the definition of transition services to include customized employment strategies and self-determination activities, and clarifying the fact that local education authorities may use discretionary dollars to bring in transition expertise or contract out transition services. H.R. 602 would require school districts to include a representative of the state ID/DD authority on the IEP team for every student with an intellectual or developmental disability from age 14 until the student leaves the school system.
• The TEAM-Empowerment Act (H.R. 603) would amend the DD Act to establish transition planning and service divisions within the state ID/DD authorities to establish a formal role and responsibility on the part of the state authority for the effective transition of youth with ID/DD to adulthood. H.R. 603 would require state authorities to work with these youth to develop Individual Transition Plans to improve outcomes and increase self-determination. The bill would increase accountability of these authorities by allowing the commissioner of the ADD to provide guidance and assistance to state ID/DD authorities, to help them be effective partners in the transition process of youth with ID/DD.
• The TEAM-Employment Act (H.R. 604) would amend the Rehabilitation Act to realign preferred outcomes for people with significant disabilities and streamline public funding by requiring the VR systems to actively engage with other state entities. The bill would promote innovation and accountability through demonstration grants focused on system reform.

The TEAM legislation takes important steps to remove the current policy barriers and prioritize the use of publicly funded supports to encourage postsecondary education and competitive, integrated employment as a preferred outcome for youth with ID/DD transitioning to adulthood. Some critics of the trio of bills have expressed concerns about the prohibition on federal funds to support segregated outcomes, such as day habilitation or center-based employment settings. State VR entities have raised questions about the ability of the VR system to take on many of the responsibilities the new laws would place on the system.

2.2.3. System Change Through Reauthorization of the Workforce Investment Act

Transition to adulthood of youth with significant disabilities will be a driving policy issue as Congress considers the reauthorization of the Workforce Investment Act. In 2011, the Senate Committee on Health, Education, Labor, and Pensions (HELP) released a comprehensive draft reauthorization package that includes major changes aimed at transforming the vocational rehabilitation system to enable it to focus on improving outcomes for youth with significant disabilities. Several dramatic enhancements have been added to the legislation to facilitate the transition of these young people into adulthood, including the following:

• Direct emphasis on the preferred outcomes of competitive, integrated employment and postsecondary education for all youth, including youth with significant disabilities.
• Required cooperative agreements among VR and other state agencies (including state ID/DD authorities) critical to the provision of transition, employment, and long-term supports and services to citizens with significant disabilities.
• Establishment of a holistic set of preemployment transition services to prepare youth with significant disabilities for entry into the general workforce.
• Creation of local transition coordinators in the VR system to ensure the effective delivery of preemployment transition services for youth with significant disabilities and to increase links between the VR system and special education.
• Targeting of 10 percent of all state VR resource allotments toward implementation of the transition components of the legislation.
• Establishment of national system-change demonstration projects on the transition of youth with significant disabilities.
• Funding directives to encourage more intensive state focus on the expansion of supported employment services to youth with significant disabilities most at risk of being placed in sheltered work or at risk of not securing employment in the general workforce.

Several practitioners and advocacy leaders have called for an expansion of VR transition services to youth with significant disabilities through the age of 26 years. Transition provisions outlined in the legislative proposal have inconsistent age eligibility requirements. State VR agencies currently provide transition supports in many cases through age 26—any decrease in the age of eligibility for services in the WIA reauthorization would be regressive to the status quo. This is a particularly important policy concern for people with significant disabilities who continue to participate in secondary education until the age of 22, then enter a postsecondary education program. Any reduction in eligibility age for the use of preemployment transition services or other VR supports could put many of these people at great risk of being pushed out of integrated environments where they are thriving.

There is growing concern about the capacity of state vocational rehabilitation agencies to implement new strategies to improve transition outcomes for youth with ID/DD unless resources to scale up existing VR agencies are available and opportunities to provide training to VR counselors on evidence-based best practices are increased.

Despite these concerns, the HELP Committee's efforts to develop a series of comprehensive reforms to the Workforce Investment Act represent a firm commitment to improve outcomes for youth and young adults with ID/DD.

2.3. Recommendations to Improve Employment Outcomes

According to the January 2011 Current Population Survey (CPS), approximately 17 percent of American citizens with disabilities are employed, compared to 63 percent of individuals without disabilities. For individuals living with ID/DD, the likelihood of participation in integrated employment is even lower, with state ID/DD agencies reporting that only 22 percent of the individuals served by these agencies participate in integrated employment (ADD, 2011, p. 3).

Despite public funding for the provision of employment services for people with disabilities who require significant supports, the employment rate of people with ID/DD remains low. Four out of five people with significant disabilities are not considered part of the labor force (ACS, 2008). A review of trend data from 2003 through 2009 confirms that participation in sheltered or facility-based employment and nonwork services grew steadily, suggesting that employment services continue to be viewed as an add-on service rather than a systemic change (Butterworth, Smith, Hall, Migliore, and Winsor, 2009; Mank, 2003). As the Institute for Community Inclusion (ICI) reported in its 2010 publication StateData: The National Report on Employment Services and Outcomes,

In FY2009, an estimated 20.3 percent of individuals receiving day supports from state IDD agencies received integrated employment services. The data demonstrate a decline in the estimated percentage of people served in integrated employment services (from 23.7 percent in 1999), suggesting that the growth seen in supported employment between the mid-1980s and mid-1990s has not continued. The data also demonstrate an increase in the percentage of people served in facility-based and non-work settings. The service setting with the highest reported percentage of individuals receiving services in FY2009 was community-based non-work (42.6 percent), followed by facility-based non-work (36.1 percent) and facility-based work (27.1 percent). Variability in the number of states that are able to report data in these three individual service categories limits our ability to pinpoint the specific setting in which growth is occurring; however, an analysis using data from states that are able to report data in each of the three service categories suggests that the percentage of individuals served in facility-based and non-work settings is increasing. (Butterworth et al., 2011, p. 8)

The new ICI data confirms that states continue to vary widely in their commitment to integrated employment—nationally, it is estimated that only 20.3 percent of those who receive day supports from state IDD agencies participated in integrated employment services during FY2009 (Butterworth et al., 2011, p. 20). This number has slowly declined after reaching 25 percent in FY2001.

To reverse this inequity in our country and optimize the self-sufficiency of people with ID/DD, we must take steps to ensure that they have meaningful opportunities to secure postsecondary education, integrated employment, and economic advancement. People with ID/DD should have the opportunity to pursue competitive, integrated employment.

2.3.1. Employment First: Integrated Employment As the Desired Outcome

People with ID/DD, their families, employers, and, increasingly, state and federal policymakers recognize the value of employment for people with disabilities and the significant contributions they make to the national workforce and the economy. The engagement of these people in the labor pool has a considerable financial impact, generating income that is returned to the economy in the form of tax revenues and reducing their reliance on public resources for needed services and supports (Cimera, 2007). The return on employment-related expenditures—currently estimated by the Social Security Administration (SSA) to be less than 0.5 percent—will increase as more people with intellectual and other significant disabilities enter and remain in employment (ACS, 2009).

States furnish a wide range of employment-related services and long-term supports under Medicaid waiver programs. In addition, funding for job training and placement is typically available from state offices of vocational rehabilitation, One Stop Career Centers, and other state and federally funded programs providing transitional assistance from school to employment, although this funding is usually time-limited.

• The ongoing recession and soaring unemployment rates present even greater challenges for citizens with ID/DD who wish to engage in competitive, integrated employment.
• The data shows that people with developmental disabilities who are employed in regular community jobs has fallen nationwide in recent years. Equally disturbing is data suggesting that the focus of service provision has, in many regions, shifted away from employment and job supports toward continued reliance on prevocational services, segregated day habilitation, and community-based nonwork activities—these kinds of services do not help participants access productive career paths or meaningful work in the community (Butterworth et al., 2011).

Unemployment is not the only economic challenge that disproportionately affects people with ID/DD. Because of the way Social Security, Medicaid, and other means-tested public supports were created, citizens with ID/DD are sentenced to a life of cyclical poverty if they wish to be deemed eligible for supports under these programs. Current asset limits attached to eligibility requirements for Supplemental Security Income (SSI) and Medicaid create disincentives to work that ultimately discourage people with ID/DD from seeking employment. Only about 9 percent of those who receive SSI are employed, with average annual earnings of less than $500 a year. Less than 0.005 percent of those who receive SSI ever leave the system and move onto employment.

According to recent projections, annual income maintenance payments to SSI recipients will reach a startling $1 trillion by 2018.

States and the Federal Government could more effectively support the capacity of people with ID/DD to live and work in the community if they redesigned home- and community-based Medicaid waiver programs to focus on self-determination, person-centered service planning, individual budgeting, and participant-directed service delivery. Policymakers are taking stock of the intent and purpose of the services provided, as well as the outcomes that are being achieved. Increasingly, support dollars are being seen as investments in people's lives and the means by which those with even the most intensive needs can become productive and contributing members of society. Accordingly, the emphasis of public funding in many states is being shifted to support activities that enable people with developmental disabilities to fully participate in work and become active members of their communities. However, as Rusch and Braddock noted, "While supported employment has made significant gains since its formal introduction in 1984 (P.L. 98-527), segregated services continue to outpace the growth of supported employment" (Rusch and Braddock, 2004, p. 48).

Several forward-thinking state DD agencies are implementing comprehensive Employment First policies to guide the funding and delivery of supports to eligible persons throughout the state's service delivery system. Employment First strategies consist of a clear set of guiding principles, policies, and practices promulgated through state statute, regulation, and operational procedures that identify employment in typical work settings as the priority for state funding and the focus of supports furnished to people with developmental disabilities during the day. States use Employment First policies to operationalize a commitment to the principle that public funds are most appropriately used as investments in people's lives, helping them access integrated employment, full community participation, and optimal well-being.

Employment First policies anchor the service delivery system, focusing funding, resource allocation, training, daily assistance, and even the provision of residential supports on the overall objective of employment and strengthening the capacity of those who receive publicly financed supports to enter the workforce and become contributing members of society. These state initiatives have shown that when supports and funding streams are focused on getting people with ID/DD into integrated employment, a greater proportion of citizens with ID/DD end up going to work. The key is to make sure that the commitment among local, state, and federal public partners is solid and sustained over time. A diversion of investment or low expectations for people with disabilities can perpetuate impediments in current policies, practices, and programs. Figure 4 shows the disparity among states in terms of their rates of participation in integrated employment services, ranging from Arkansas at 4 percent to Washington at 88 percent. Other states with high participation rates in integrated employment services are Oklahoma (60%), Connecticut (54%), Louisiana (47%), and New Hampshire (46%).

Although Employment First policies are being adopted by many states, definitions of "integrated employment" and the approaches used to accomplish operational objectives vary, reflecting the unique characteristics of each state's service delivery system. To support states that are committed to changing systems and infusing an Employment First paradigm into policy and practice, the State Employment Leadership Network (SELN)

Figure 4. Percentage of People with ID/DD Participating in Integrated Employment Services by State, 2009[ 11]

Source: Data shared by NASDDDS Executive Director Nancy Thaler in July 2011 during an NCD-hosted Congressional Briefing on the state of long-term supports and services for individuals with ID/DD in honor of the 12th anniversary of the Olmstead decision. Data originated from: Butterworth, J., Cohen Hall, A., Smith, F.A., Migliore, A., Winsor, J.A. (2011).StateData: The National Report on Employment Services and Outcomes. Institute for Community Inclusion (UCEDD), Boston, MA: University of Massachusetts. Pg. 19.

was created in 2007 through a partnership between the National Association of State Directors of Developmental Disabilities Services (NASDDDS) and the Institute for Community Inclusion (ICI). SELN provides training and technical assistance to 26 states on promising practices and lessons learned in other states, including ideas and strategies related to goal-setting, data collection, policy development, and performance measurement. The network focuses on a wide range of policies, operational practices, funding methodologies, and training procedures designed to significantly increase the number of people with developmental disabilities who are employed in integrated community jobs. In 2009, ICI and NASDDDS compiled a list of key Employment First strategies that states have been implementing in recent years (see table 1).[ 12]

Source: Kiernan, B. and Moseley C. (2009) "Employment First: A Policy Position for States – Focusing on Integrated Employment as the Desired Outcome". Prepared for the State Employment Leadership Network and the Collaboration to Promote Self-Determination in 2009.

ADD can play a pivotal role in helping these state systems foster an expanded focus on Employment First strategies across the country. Proponents of these strategies have long advocated for the establishment of a federal Employment First policy in the form of legislation, regulatory guidance, or an Executive Order. ADD could lead the discussion about establishing a federal Employment First policy and possibly even including an Employment First section in the DD Act when it is reauthorized. ADD can also promote the continued evolution of Employment First strategies by leveraging resources to provide additional support for such endeavors. ADD has recently demonstrated a strong commitment by awarding five-year Partnership in Employment Systems Change grants to six states. These grants reflect a strong commitment on the part of the agency to promote a solid focus on employment systems change, especially given ADD's current budget constraints.[ 14]

Employment is a cross-agency responsibility of the federal government.

2.3.2. Reconceptualizing Supported Employment Services

Reauthorization of the Workforce Investment Act (WIA) provides an extraordinary opportunity to reform the vocational rehabilitation system with the goal of reconceptualizing the role of supported employment services (SES) to ensure an expanded and more effective use of these services to realize the aims of Employment First policy. Recent attempts by Congress to craft WIA reauthorization legislation take several important steps toward this aim, including the following proposals:

• Extend supported employment services to 24 months.
• Require cooperative agreements among vocational rehabilitation and other state agencies critical to the provision of transition, employment, and long-term supports and services to citizens with significant disabilities.
• Strengthen data collection and reporting requirements to capture more detailed, outcome-oriented data, stratified by disability type, to better evaluate the effectiveness of the VR system in helping people with disabilities complete employment objectives (emphasizing attainment of competitive, integrated employment).
• Focus the attention of research and training activities on supporting providers of sheltered employment who want to transform into providers of community-based employment and supports that lead to competitive, integrated employment, with restrictions on the use of training dollars and technical assistance that perpetuate segregated or sheltered employment practices.
• Integrate various federal programs focused on the employment and independent living of individuals with ID/DD into the newly-established Administration on Community Living within HHS in order to ensure a strong coordination of policies and resources.

2.3.3. Promoting Employment in the Context of Medicaid Reform

The crisis in Medicaid spending has sparked a national debate about whether the time has come to undertake a comprehensive reformation of the Medicaid system. A cross-disability dialogue with CMS and congressional leaders has led to several policy recommendations on reforming the focus of Medicaid supports for working-age beneficiaries with significant disabilities.

Table 2. Opportunities to Promote and Support Employment in MFP Through Policies and Services[ 17]

MFP=Money Follows the Person

FMAP=Federal Medical Assistance Percentage

HCBS=home-and community-based services

HCBSW=home-and community-based services waiver

NF=nursing facility

*Benefits counseling: If a state chooses an MFP benefits counseling option, costs associated with that model may not be combined with or duplicate any other federally funded program.

**Cash and counseling/flexibility model: State planning would be necessary to develop the infrastructure to support the service delivery model, including how the employment specialists and cash and counseling/flexible budgeting model would eventually function within the state's overall infrastructure as part of rebalancing activities.

Source: (2011). Shea, A. Disability & Elderly Health Programs Group, Centers for Medicare & Medicaid Services.

2.4. Ongoing Supports Over the Lifespan

People with ID/DD should have access to opportunities and the necessary supports to participate in community life, have interdependent relationships, live in homes and communities of their choosing, and make contributions to their families, communities, states, and the nation. With education and support, communities can be accessible and responsive to the needs of people with ID/DD and their families, and are enriched by the full and active participation in and contributions of these people. Federal policy related to the provision of LTSS for citizens with ID/DD should be based on a holistic framework that customizes supports according to the individual needs of beneficiaries. The supports should be focused on helping the person achieve independence, economic advancement, optimal self-sufficiency, and full community participation. With regard to the DD Act, the focus of the DD network and other systems that provide ongoing supports to citizens with ID/DD should be framed in an updated, comprehensive model that emphasizes cohesiveness over the lifespan. Figure 5 shows the comprehensive supports required in the lifespan model, including health and wellness; housing; sustained education, training, and employment; transportation; asset development and financial planning; and recreation.

The original NCD report, Rising Expectations, contained an in-depth exploration of the DD system's capacity to provide ongoing supports. This supplement offers additional policy considerations related to Medicaid reform and the provision of LTSS for citizens with ID/DD. Additionally, the Collaboration to Promote Self-Determination convened several consumer and family-directed national disability organizations in 2010 to outline a set of values and guiding principles for framing the future provision of publicly financed LTSS for citizens with ID/DD; these are summarized in table 3.[ 18]

Figure 5. Model:Comprehensive Supports Over the Lifespan

Source: Serena Lowe, President, AnereS Strategies, LLC.

Table 3. Value Framework and Guiding Principles for the Provision of LTSS

Source: (2010). Collaboration to Promote Self-Determination. http://thecpsd.org/about/value-frame-work/

2.4.1. Defining "Community" to Promote Inclusion and Full Participation

The Medicaid HCBS waiver program (also known as 1915(c) waivers) is one of the primary funding streams for long-term services and supports for citizens with ID/DD. Institutional settings have their own funding streams, and the misuse of HCBS waiver funds for institution-like settings in both residence and daily life restrict the choices available to individuals and families by forcing a choice heavily biased toward one or more institutional settings.

HCBS waiver funds are limited and are designed to ensure that citizens with disabilities have the supports they need to live and work in integrated settings. In April 2011, CMS published a Notice of Proposed Rulemaking (CMS-2296-P) clarifying the types of settings for which Medicaid HCBS waiver funding could be used. The proposed regulation was intended to establish minimum standards to ensure that HBCS are delivered in integrated community settings and that waiver funds are not spent in settings that are congregate in nature or have the characteristics of an institution.[ 19] ADD has supported and should continue to support the efforts of CMS to move forward in implementing policy that will strengthen the integrity of the HCBS program by ensuring that funds are dedicated to getting people living, working, and fully participating in integrated settings.

The national self-advocacy movement has been particularly vocal about the importance of preserving HCBS waiver funding for community-based options. The 2011 report Keeping the Promise – Self-Advocates Defining the Meaning of Community[ 20]From the perspective of the national self-advocacy organizations that co-authored the publication (with ADD's assistance), institutions are defined as those that—

• Include only people with disabilities.
• Include more than three people who have not chosen to live together.
• Do not permit people to lock their bedroom or bathroom doors.
• Enforce regimented meal and sleep times.
• Limit visitors, including who may visit and when they may do so.
• Restrict when an individual may enter or exit the home.
• Restrict people's religious practices or beliefs.
• Limit a person's ability to select or remove support staff.
• Restrict people's sexual preferences or activity.
• Require people to move if they want to make changes in the personnel providing their support or the nature of their support.
• Restrict access to the telephone or the Internet.
• Restrict access to broader community life and activities.

Community settings are defined in the report as having, at a minimum, the following characteristics:

• If people share a living arrangement, they have chosen to do so and chosen the people they will live with.
• Residents have lockable access to and egress from their own living area.
• Access to the greater community is easily facilitated on the basis of the person's preferences.
• People have the right to hire and fire their own staff.
• People may choose what, when, and where they eat, drink, and engage in social activities.
• People have access to affordable, accessible transportation to participate in the broader community, including attendance at places of worship, volunteerism, social and civic engagement, and natural support networks.

The report states:

We lose an important aspect of community life if we spend our time only around people with disabilities, in day habilitation centers, and are not able to be included in our broader communities…. We must have opportunities to work in jobs as part of the general work force, among people who do not have disabilities. Opportunities for earning wages and benefits should be the same as those of everyone else. CMS funding should be used for supported employment and not be used for sheltered workshops or settings paying sub-minimum wage to people with disabilities. CMS community funding should not be used for any segregated settings, including day habilitation centers. Anything that segregates us from our communities is not community.[ 21]

The definition of community has important public policy implications for the delivery of long-term supports and services for people with ID/DD. CMS should clarify that HCBS funds may not be used for congregate care settings, except where small groups of people with disabilities choose to live together and where the setting does not have the qualities of an institution. The rule should prohibit states from using HCBS waiver funds to provide services to people who are living in a setting in which they are required to receive and participate in services as a condition of continued tenancy. CMS should review state applications to ensure that these standards are met.

2.4.2. Realigning Public Resources to Prioritize Home and Community Based Services

Over the past several years, significant federal expenditures intended to help people with disabilities live and work independently in integrated community settings have achieved promising results. In 2009, federal and state investments in services for people with ID/DD totaled $53.21 billion; 75.5 percent ($40.2 billion) of these investments came from state and federal Medicaid contributions. Sixty-three percent of the funds came from HCBS waivers; 30 percent were dedicated to intermediate care facilities for people with intellectual disabilities; and 7 percent were directed toward other Medicaid-related services.[ 22] However, despite the increased funding from HCBS waivers, many funds intended to help people with disabilities live, work, and engage in their communities continue to be misdirected to services that produce the opposite outcomes. As a result, thousands of people continue to receive services that are costly to the system, result in further segregation, impede individual progress, and create additional barriers to their successful participation in society at optimal levels of self-sufficiency. Table 4 shows the average cost per person according to the type of residential support received.

2.4.3. Transformational Change in the Context of Medicaid Reform

ADD has the opportunity to inform the ongoing work of CMS in defining and prioritizing waiver supports. The continued investment of federal funds in traditional, institutionally biased, and segregated facility-based models of service delivery for working-age adults with disabilities—including nursing home care and group residential housing, sheltered workshops, prevocational services, day treatment, and day habilitation—must be reexamined to determine whether they are producing the outcomes that Congress, the Administration, and the U.S. Supreme Court intend. So far, 14 states have closed all institutions within their jurisdiction.[ 23] NCD held its 2011 Living Forum in Portland, Oregon, to highlight the state's 20-year pathway to institutional closure. The forum identified three foundations for system change: (1) building values of community inclusion; (2) understanding influence and opportunities; and (3) developing long-term strategies for transitioning and sustaining people in community settings.[ 25]

Table 4. Comparison of Costs of Institutional Versus Community-Based Residential Services for Working-Age Medicaid Beneficiaries with Significant Disabilities[ 24]

Source: Presented by NASDDDS Executive Director Nancy Thaler in July 2011 during an NCD-hosted Congressional Briefing on the state of long-term supports and services for individuals with ID/DD in honor of the 12th anniversary of the Olmstead decision.

Federal spending and entitlement programs must be rebalanced and reinvested to create incentives for the use of evidence-based practices that result in living, working, and participating in the community as the norm, rather than the exception, for people with significant disabilities. Building the capacity of people with significant disabilities to be self-sufficient, taxpaying citizens who can contribute to their communities must be the expected outcome of public investments if we are to create an affordable and sustainable system of supports.

Medicaid eligibility requirements should be crafted to promote work, family, and savings. Current eligibility criteria set unrealistically low income and asset limits and penalize people who are married, which does not reflect the common American values that people should be encouraged to work to their optimal potential, build savings for their future needs, and create and maintain strong familial structures. These issues arise not only in Medicaid but in other entitlement programs that people with disabilities rely on for survival, including Social Security, Temporary Assistance for Needy Families, and supplemental nutrition assistance programs. Until the eligibility structures of these programs are significantly overhauled and aligned, tremendous barriers will perpetuate cycles of poverty and dependence.

Data overwhelmingly demonstrates that where people live affects where they work, and where they work affects where they live. Medicaid reform must align public policy, regulations, incentives, and performance measurement, with the goal of helping people live, work, and participate in their communities.

Again, ADD can play an important leadership role in establishing a framework of guiding principles for the upcoming Medicaid debate. For example, on September 12, 2011, CMS released guidance on the Balancing Incentive Initiative, authorized by Section 10202 of the Affordable Care Act, which allows CMS to award additional federal funds to states to provide financial incentives to increase access to noninstitutionally based long-term services and supports (LTSS). ADD could have played an important role in the development of criteria for the Balancing Incentive Initiative, which provides an enhanced Federal Medical Assistance Percentage (FMAP) rate to states that focus more of their federal resources on home- and community-based options.[ 26]

In addition to key structural reforms that result in a greater emphasis on the prioritization of HCBS, states that want to take advantage of the enhanced FMAP rate must agree to two additional requirements. First, they must agree to provide services to eligible beneficiaries regardless of how people enter the program (i.e., no preference is allowed for a single point of entry). Second, states will no longer be allowed to enter into contracts with one entity to provide both case management and the services people with ID/DD can receive using waiver dollars.