SECTION 1: Reforming the Federal and State ID/DD Infrastructure

1.1. Increasing ADD's Authority and Prominence

     1.1.1. Reassessing ADD's Position in the Administration for Children and Families

     1.1.2. Increasing ADD's Authority

     1.1.3. Restructuring the Federal Government Response to Disability: Implications for ADD

     1.1.4. Ensuring Flexibility for ADD to Collaborate Across Federal Systems

     1.1.5. Promoting Effective ADD Leadership

1.2. Strengthening the DD Network Through Expansion and Coordination

     1.2.1. Requiring Coordinated Planning Among DD Network Partners

     1.2.2. Pursuing Uniform Data Collection, Consistent Performance Measurement, and Shared Accountability

     1.2.3. Empowering and Guiding State ID/DD Authorities

     1.2.4. Establishing a Funding Stream for Self-Advocacy

     1.2.5. Improving Sustainability Through Collective Responsibility

1.3. NCD Recommendations to Improve the ID/DD Infrastructure

Despite significant gains, people with DD continue to face considerable barriers to full integration, maximum independence, and self-determination. Some of these barriers result from state programs and policies and the wide variation in financial commitment and supports from state to state. Other barriers result from national policies that are inconsistent with each other and with the current DD paradigm (NCD, 2011, p. 24).

NCD's Rising Expectations identified several challenges related to ADD's ability to implement the principles of the DD Act effectively under its existing structural constraints. First, there is a significant disconnect between outcomes desired from the DD Act and ADD's ability to direct services, influence program design, and guide policy development across federal systems. Second, given ADD's place in the organizational structure of the Department of Health and Human Services (HHS), it is limited to playing a minimal role through interagency coordinating functions. As noted in Rising Expectations, "Outreach to other departments is tenuous at best, with the burden being assumed by the comparatively minuscule resources of ADD and dependent upon the leadership of the agencies" (NCD, 2011, p. 25).

Reauthorization of the DD Act is essential to modernize the system. In addition, ADD needs a thoughtful reorganization and expansion of its authority to ensure a solid connection among the DD networks and state authorities on ID/DD services, as well as expansion of its leadership role to effectuate the alignment of federal policies, programs, and resources. As reported in Rising Expectations, "Given current policy and program structures, however, it is easier to raise expectations and awareness than it is to serve needs" (NCD, 2011, p. 24).

1.1. Increasing ADD's Authority and Prominence

Developing a coherent federal policy requires the leadership of a federal entity with the authority and influence to bring federal partners to the table. No such entity currently exists for ID/DD policy. The DD Act legislation established an important set of goals and rights for people with DD that could form the theoretical basis of a strong federal policy, but ADD lacks the authority and influence to broaden the reach of these goals beyond the DD Act programs themselves (NCD, 2011, p. 33).

As indicated in Rising Expectations, the federal infrastructure necessary to support the growing expectations of people with ID/DD is severely limited in scope, authority, and resources. One of the most significant impediments to fully realizing the objectives of the DD Act is a lack of a strong federal agency with the statutory and administrative authority to effectively lead and coordinate the Federal Government's role in addressing the needs of people with ID/DD.

1.1.1. Reassessing ADD's Position in the Administration for Children and Families

ADD has been part of the Administration for Children and Families (ACF), an Operating Division within HHS, since the 1980s. The current organizational structure greatly impedes the ability of ADD's leaders to efficiently engage in high-level internal decision making within the HHS/ACF hierarchy. ADD also has little formal authority to engage other federal partners vital to the effective dissemination of policies, delivery of programs, and collective commitment to improved outcomes for people with ID/DD.

Administrative constraints prevent ADD's leadership from exercising any authority over its budget—all resources are controlled and disseminated by ACF. Prioritization for resources among all the programs housed under the ACF umbrella is highly competitive and overly complex. ADD's leaders must divert energy from their central role of overseeing programs authorized under the DD Act toward securing resources, decision-making authority, and relevance in an environment in which ADD is just one of a multitude of priorities.

Under this system, ADD has suffered in recent years from budget decreases and human resource constraints, while the objectives and expectations of stakeholders in the ID/DD community have continued to evolve. Providing ADD with its own federal administrative authority—including a budget and resources that reflect the percentage of the population the agency represents and the portfolio for which it is responsible—are the first steps in system transformation. Figure 1 shows the ACF organizational structure in 2011; ADD was previously one of 10 key program offices that report to and are managed by ACF. The other nine offices are the Office of Family Assistance (OFA); Administration on Children, Youth and Families; Office of Child Support Enforcement; Office of Refugee Resettlement; Administration for Native Americans; Office of Community Services; Office of Head Start; Office of Public Affairs; and Office of Child Care. ACH has regional offices in Boston; New York; Philadelphia; Atlanta; Chicago; Dallas; Kansas City, MO; Denver; San Francisco; and Seattle. However, these regional offices did not support ADD programs.

Figure 1. ACF Organizational Structure, 2011

Graphical representation of the ACF Organizational Structure in 2011

Source: Administration on Children & Families, U.S. Department of Health and Human Services, 2011.

1.1.2. Increasing ADD's Authority

Elevating ADD at the federal level so that it has both the statutory and administrative authority necessary to fully realize the aims of the DD Act would allow the establishment of the following:

  • Unified national goals to focus the attention of leaders, service providers, researchers, and practitioners on the critical issues facing people with ID/DD and their families.
  • The development of a clear, coordinated national research agenda on ID/DD.
  • Authority for ADD to work across federal agencies to ensure that all domains of public life possess the focus and competencies to include people with ID/DD through inclusion and integration.
  • Authority and resources for ADD to centralize evaluation of various federal and state public services to determine which public investments are most effective in achieving desired outcomes for people with developmental disabilities.
  • Guidance and support to state ID/DD authorities to assist in the development of effective service systems through dissemination of policy guidance, provision of training and technical assistance to state systems, and investments in transformative system-change demonstrations.
  • The ability to effectively collaborate with various federal agencies to develop joint guidance, coordinate data collection efforts, develop consistent objectives and common performance measures, and implement stringent evaluation methods.

Reauthorization of the DD Act creates an opportunity to significantly elevate and expand ADD's authority, to empower the agency to deliver on the ambitious agenda set forth in the DD Act.

1.1.3. Restructuring the Federal Government Response to Disability: Implications for ADD

Numerous proposals have been developed in recent years to improve the coordination of federal programs and agencies focused on disability policy. One proposal calls for the creation of an entity that would consolidate several existing federal programs into an entity that has statutory and administrative authority to coordinate policy goals, program objectives, data collection requirements, and performance measures.

Figure 2 outlines a model for such an entity that includes the following four core divisions:

  • Administration on Community Living, which would be responsible for state independent living grants and other national initiatives, managed by HHS, and focused on supporting people to live in the community, such as the Money Follows the Person demonstration program.
  • Administration on Economic Empowerment, which would be responsible for workforce incentives and financial capability programs.
  • Administration on Assistive and Universal Design Technology, which would include state assistive technology projects, alternative financing initiatives, and rehabilitation engineering research centers currently operated by the National Institute for Disability and Rehabilitation Research.
  • ADD, whose portfolio would be expanded to include a focus on transition issues across the lifespan, the promotion of Employment First strategies, and expanded protection and advocacy services.

Figure 2. Possible Organizational Structure of an Independent Living Administration [1]

Graphical representation of the possible organizational structure of an independent living administration

Source: Prepared by Michael Morris of the National Disability Institute for both the National Council on Independent Living and the Collaboration to Promote Self- Determination (2010).

Conceptually these four divisions would report directly to an assistant secretary-level position.

One important issue is where such an entity would be located within the Federal Government. The Senate draft reauthorization of the Workforce Investment Act (WIA), introduced in June 2011, authorizes an Independent Living Administration (ILA) under the Office of Special Education and Rehabilitative Services in the Department of Education. Under this proposal, the ILA is tied to the vocational rehabilitation system; therefore, it could not be used to transition federal entities such as ADD to the ILA.

Other proposals have suggested housing such an entity within HHS. Coincidentally, HHS recently announced a reorganization of its internal structure that brings together several program offices that provide supports to the aging and disability communities under a newly-created operating division called the Administration on Community Living (ACL). ACL would be led by an Assistant Secretary, who will report directly to the Secretary of HHS. ACL will include the Administration on Aging, Office on Disability Policy, and ADD as well as policy, research and evaluation components. Proponents of this reorganization believe that ACL will significantly elevate ADD's role within HHS and address some of the bureaucratic challenges the office has experienced while under the auspices of ACF.

Regardless of its location, strong bipartisan support exists for the creation of a centralized entity that can bring various federal programs and agencies together under one umbrella. Certainly, the newly created ACL repositions and elevates ADD to a new playing field and ensures that ADD is on equal footing with the AOA at the federal level. ACL would also ensure a greater balance in authority within HHS between these program offices and the Centers for Medicare and Medicaid Services (CMS), which provides the primary funding and reimbursement of both medical and nonmedical long-term supports and services to both the elderly and individuals with disabilities.

While the creation of the ACL is a tremendous step forward in elevating the role of the ADD, a gap will remain in coordination among services specific to the ID/DD population that are housed outside of HHS and the ACL. An additional step worthy of administrative dialogue is to determine whether other program offices and activities of the federal government should eventually be shifted into the ACL. Certainly, the model in Figure 2 provides a more comprehensive consolidation of numerous federal programs and initiatives that could serve as a framework for future expansion of ACL as it is evolves over time.

1.1.4. Ensuring Flexibility for ADD to Collaborate Across Federal Systems

To optimize its effectiveness in the future, ADD must have the authority, flexibility, and resources to enter into meaningful cooperative agreements and solid partnerships with the federal agencies that govern programs essential to the progress of citizens with ID/DD. This includes collaborating with other entities in HHS, as well as working with the Departments of Education, Housing and Urban Development (HUD), Labor, Transportation, and Treasury, and the Social Security Administration (SSA). While ADD currently lacks sufficient authority or funding to engage in large collaborative efforts, it does have the ability to reach out in formal, proactive ways to these agencies as an advocate to ensure that the needs of people with ID/DD are incorporated into policies and programs. Currently, ADD has been rather limited in its ability to persuade other agencies to prioritize citizens with ID/DD, but a general consensus exists among stakeholders that ADD's central role should be to function as a "bully pulpit" and ardent advocate across federal agencies on behalf of people with ID/DD.

1.1.5. Promoting Effective ADD Leadership

Despite the constraints related to ADD's lack of authority, flexibility, and resources, ADD leaders have made significant efforts over the past two years to increase the Federal Government's response to citizens with ID/DD by focusing heavily on public outreach and strategic planning. In 2010, ADD hosted five regional two-day interactive forums entitled Envisioning the Future that engaged key ID/DD stakeholders — including self-advocates, family advocates, practitioners, researchers, state and federal officials, and representatives from various DD network components — to learn more about what the field would like to see ADD prioritize as part of its five-year strategic plan. The forums culminated with a national stakeholders meeting in Washington, D.C., followed by a public comment process through which the agency received more than 4,000 comments from stakeholders across the country.

Throughout the regional sessions and at the national stakeholders meeting, participants emphasized that ADD should focus on enhancing its central role as the "national watchdog" for the interests of citizens with ID/DD across federal policies, programs, and agencies, and should advocate for the full inclusion and economic advancement of people with ID/DD.

The Envisioning the Future forums are an example of ADD's attempts to increase national awareness of the principles of the DD Act and the importance of empowering citizens with ID/DD and their families in federal public policy. ADD's five-year strategic plan has not yet been released, but the agency's commitment in recent months to establishing a vision is noteworthy; it offers a tremendous opportunity to reflect on and strengthen the agency's stature as the leading federal voice advocating for the rights of citizens with ID/DD.

1.2. Strengthening the DD Network Through Expansion and Coordination

In addition to ADD, the DD Act authorizes four other main programs:

  • State Councils on Developmental Disabilities (subtitle B);
  • Protection and Advocacy Systems (subtitle C);
  • University Centers of Excellence in Developmental Disabilities (subtitle D); and
  • Projects of National Significance (subtitle E).

The first three programs comprise the backbone of the DD network in the United States. While this network has contributed immensely to the implementation of the Act, several statutory gaps have prevented the network and ADD from reaching their collective potential. Three key strategies for improving the collaborative effectiveness of ADD and the DD network are (1) the development of a coordinated planning process; (2) the establishment of a consistent data collection and performance measurement system; and (3) the inclusion of the state ID/DD authorities and self-advocacy organizations as formal components of the network.

1.2.1. Requiring Coordinated Planning Among DD Network Partners

The DD Act calls for separate and distinct planning processes in each of the three elements of the DD network and does not allow for the alignment of these planning processes nor require shared accountability among the various DD network components. The Act must be amended to enable ADD to reframe the planning process across all network partners. An ideal model would allow all elements of a state's DD network to collaborate on shared goals related to education, health, community living, and employment, while preserving their discrete roles and responsibilities for particular outcomes. For example, the state DD network could use a coordinated planning process to develop one specific goal in the areas of education, health, community living, and employment that all components of the network would work on collectively. In a coordinated planning model, it is extremely important to strike a careful balance between prioritizing shared network goals and continuing to ensure accountability for achieving individual results related to the core competencies of each partner.

Implementing a planning process that ensures shared goals and accountability across the state DD networks would go a long way toward fostering greater focus on a common set of objectives and projected outcomes. Furthermore, a coordinated planning process would likely result in a more efficient blending of resources among the various components of the DD network and foster increased sustainability through collective responsibility.

One technical adjustment that should be made is to modify the timing of the planning process, so that plans from state DD networks are developed in five-year intervals, with a fifth of the states submitting each year. Given ADD's constrained resources, this would allow the agency to conduct a higher quality review and provide better feedback to state DD networks during their planning processes.

1.2.2. Pursuing Uniform Data Collection, Consistent Performance Measurement, and Shared Accountability

ADD invests heavily in the data collection efforts of the DD networks, but the emphasis has traditionally been on outputs rather than outcomes. As a result, the agency is constantly challenged to demonstrate through data the impact the networks are having on implementation of the DD Act in the field. It is clear that the DD networks are playing a critical role in the evolution of several important initiatives at the state level, but a lot of this work is anecdotal or not adequately captured under the performance measurement tools required by the Office of Management and Budget (OMB). The DD network needs to collect the kinds of data that demonstrate the true impact, effectiveness, and achievement of the individual components and the overall network.

In response to this challenge, ADD has focused on improving overall data collection efforts, including the development of a uniform set of key indicators. Each network will be held accountable for making progress toward each indicator, by a certain increment, in alignment with the principles of the DD Act. The University Centers of Excellence in Developmental Disabilities (UCEDDs) and the state DD councils have established workgroups, working with ADD staff, to develop a logic model and alternative data collection methods. The P&As have an independent workgroup developing recommended standards. Additionally, more than half of all state DD councils have begun to use the DD Suite data management system to manage and compile outcome data. DD Suite is an enterprise performance management system designed specifically to manage DD council projects and data more efficiently and effectively, and to streamline completion of annual federal reports. It is a user-friendly tool for collecting, monitoring, and managing data from projects; collecting federal performance data; completing the State Plan and Annual Program Performance Report (PPR) and creating internal reports for monitoring and analyzing council projects. State DD councils are currently required to submit their state plans on DD Suite; now, and beginning in fiscal year (FY) 2012, PPRs must also be completed on DD Suite.

A coordinated planning process with mutual objectives and expectations will help in the creation of a consolidated data collection effort. However, beyond strengthening the data collection efforts of ADD and the DD network, it is important to develop an evaluative model that can combine data from various federal sources (including RSA-911, CMS, Department of Education, and SSA. Such a model would allow ADD and its federal partners to assess ID/DD outcomes, identify policy barriers and service gaps, and complete ongoing trends analyses to determine whether the quality of life of people with ID/DD and their families is improving over time. Several challenges must be addressed in developing such a model.

First, ADD currently has no legislative authority to require federal partners to work toward a more synergistic data collection/sharing model. Thus, the success of a collaborative data collection process across federal systems depends on the willingness of various federal agencies and their networks in the field to invest the time and resources. Second, the diversity in type and definition of variables, collection samples, and timelines among various federal data collection systems would have to be addressed in a way that preserves the legitimacy and credibility of a coordinated data collection and evaluation model.

These combined strategies would allow the Federal Government to effectively measure the impact of ADD, the DD network, and other federal agencies that serve citizens with ID/DD on service delivery and outcomes. Furthermore, a more sophisticated data collection effort could provide information necessary to demonstrate the importance of continued federal investments in ADD and the DD network.

1.2.3. Empowering and Guiding State ID/DD Authorities

Support services for people with developmental disabilities are designed, funded, and managed primarily by state governments, generally through a state developmental disability office. These offices are often a component of a state human services or health agency. People with developmental disabilities receive medical services through the state Medicaid agency, and may receive time-limited services from the state's vocational rehabilitation office, but the state ID/DD authorities are the primary entities with the responsibility to meet the support needs of people with ID/DD.

State ID/DD authorities serve more than a million children and adults annually and manage over $42 billion in public funding, mainly through Medicaid waiver resources (Kaiser Foundation, 2011). The state ID/DD authority is often the primary, if not exclusive, system that people with ID/DD and their families rely on for publicly financed supports. Because these people are typically born with their disability and have the disability throughout their lives, their relationship with the state DD services agency lasts decades.

The DD Act evolved out of a series of measures adopted in the 1960s and early 1970s that initially provided grants to states to stimulate community developmental disabilities services at the state and local levels. As states began to use Medicaid 1915(c) home- and community-based services (HCBS) waivers to secure federal financial participation in noninstitutional services for people with developmental disabilities, the focus of the DD Act moved away from direct services toward planning, protection, and advocacy. As a result, ADD has maintained a funding and policy relationship with planning entities such as the state DD councils, but has little or no connection with the state ID/DD authorities that provide services for this population.

In fact, no federal agency has a direct connection or authority over state ID/DD authorities. CMS, which oversees the primary funding source for ID/DD services (1915(c) waivers), exercises authority over specific Medicaid reimbursement policy and establishes health and safety and other requirements for Medicaid-funded HCBS programs but is not empowered to take a holistic, population-specific policy approach to the service systems it funds. Furthermore, in practice, CMS provides oversight and maintains formal relationships with only the state Medicaid agencies, which delegate their authority for operating 1915(c) waiver programs that serve people with ID/DD to the state authorities. Ultimately, the relationship of CMS to the state ID/DD authorities, as channeled through the state Medicaid agencies, is one of insurer or purchaser rather than full policy partner.

1.2.4. Establishing a Funding Stream for Self-Advocacy

Recognizing the value of the growing self-advocacy movement, NCD recommended in Rising Expectations, that HHS support the movement in a manner that does not rely solely on the resources of the DD network partners. The funding should be focused on capacity building, and the integrity of the self-advocacy movement can only be preserved if funding is related to grassroots, community-based advocacy development. Thus, this funding should support local self-advocacy organizations and technical assistance to local self-advocacy organizations, rather than through the traditional state-level formulation of the other DD network partners. Similar to the Centers on Independent Living program, funding at the local level, rather than at the state level, will ensure a more competitive funding process and help preserve the independence of self-advocacy groups.

Self-advocates can and should play a more pivotal role in helping shape policies, programs, research, and public investments in areas that directly affect their lives. For example, self-advocates could greatly inform the development of community-based participatory research models (Nicolaidis and Boisclair, 2011).[3]

1.2.5. Improving Sustainability Through Collective Responsibility

Shared accountability for common objectives and the implementation of a coordinated planning process, coupled with improved data collection systems and an expanded DD network, are likely to greatly enhance the case for increasing federal investments in the various programs authorized under the DD Act. However, sustainability must also be a shared responsibility—the DD network, states, and community partners must think innovatively about how to sustain promising practices over time. For example, the DD Act does not require a match among state or local partners competing for a Project of National Significance grant. Without this requirement, no incentive exists to ensure the continued sustainability of the initiative once the grant period ends. In the current fiscal environment, sustainability is a tremendous challenge; all stakeholders in the ID/DD system must be committed to addressing this issue through innovation and the development of additional resources.

1.3. NCD Recommendations to Improve the ID/DD Infrastructure

To increase ADD's effectiveness as the preeminent federal agency tasked with promoting the interests of citizens with ID/DD in federal policy, NCD recommends:

  • Congress should give ADD stronger administrative authority to effectively lead and coordinate federal policy related to addressing the needs of citizens with ID/DD.
  • HHS should leverage the newly-created ACL to further elevate ADD's administrative influence and responsibilities within HHS.
  • ADD should enter into cooperative agreements and partnerships with other federal agencies through the use of various administrative tools.
  • Congress should expand ADD's authority to facilitate stronger coordination among the three key components of state DD networks by establishing a uniform planning process among state DD councils, protection and advocacy systems, and University Centers on Excellence in Developmental Disabilities (UCEDDs).
  • ADD should pursue a uniform data collection process among the various elements of the DD network and expand existing efforts to develop more effective tools to measure and evaluate the impact of services, programs, and initiatives on people with ID/DD.
  • ADD should initiate and lead efforts to build a system to foster increased cross-system accountability for outcomes for people with ID/DD by encouraging multiagency agreements regarding the collection, tracking, and recording of data on people with ID/DD.
  • Congress should acknowledge and include state ID/DD authorities as an additional component of the DD network, with operational funding provided by and under the jurisdiction of ADD.
  • Congress should provide a separate and distinct funding stream for capacity building and infrastructural support to local self-advocacy organizations, and should acknowledge these entities as an additional component of state DD networks.
  • The DD network should formally and more significantly engage self-advocates in the formation of policies, practices, research strategies, and public investments that directly affect their lives. For example, NCD recommends that UCEDDs should expand and leverage existing initiatives with self-advocates using community-based participatory research models.
  • Congress should focus on improving the sustainability of Projects of National Significance (PNS) by passing legislation requiring grantees to solidify a local or state match as a condition of receiving federal grant funding for PNS endeavors.

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