Friday, January 1, 2016

The DD Act : Policies and Principles Through the Looking Glass

Recent posts on the DD Act  - an in-depth look at the DD Act and how it helps but also harms people with developmental disabilities.

The DD Act “Policies” apply to all programs, projects, and activities funded under Title I of the Act. The principles that are the basis for policies are listed in the DD Act and are similar to the “findings” in the DD Act in that they include statements that are inconsistent with the definition of developmental disability

People with DD present a wide spectrum of abilities and disabilities and individuals vary greatly in their degree of functional limitation. Many of the statements of principle fail to acknowledge these differences and assume abilities that many do not have.

While most of the principles listed in the DD Act are an accurate reflection of the needs and circumstances of people with DD and their families, many are merely assertions based on wishful thinking and false generalizations about people with DD. They reveal an unwillingness by policy makers and their advisers to acknowledge the full scope of developmental disabilities.

Many people with DD have been unjustly excluded from participation and inclusion in their communities. An admirable goal of the DD Act is to correct this injustice. No less important, however, is the injustice of limiting access to specialized services and living situations that many people with DD need and prefer for both their survival and enjoyment of life. Because the DD Act policies do not identify these preferences or promote their availability, a part of the DD population is excluded from consideration in the DD Act. Policies that fail to recognize diversity among people with DD, often result in unnecessary controversy, pitting one faction against another, rancorous infighting, and harm to the people who are supposed to be helped. 

Many people with DD will never be fully capable of independence, self-determination, productivity, and full inclusion and integration in the community, even with every imaginable support that might be offered. Their right to services and support appropriate to their individual needs is confirmed by the DD Act Bill of Rights . The DD Act findings, purpose, and policies, however, do not assure that these rights will be respected. 

Because DD Act programs rely on the inaccurate assertion that all people with DD have the potential to be fully capable adults and integrated into “the community”, program activities are necessarily limited to those that promise to transform people with DD into economically productive and self-reliant citizens or at least improve their image. The Act lacks a commitment to people for whom these goals are not fully achievable.

One of the selling points to policy makers for spending money on DD Act programs, is the claim that people with DD and their families do not need or want expensive specialized services that may not result in full inclusion and integration into the community. Whether or not this is true, it is an appealing way to market programs. Add to that the admonition by federally-funded advocacy groups that using public funds to support services that are not promoted by the DD Act, may violate the rights of people with DD. The rationale for this claim is that specialized services that are used primarily by people with disabilities are inherently discriminatory, because they separate people with disabilities from non-disabled people. Even when the people served and their families fully support and participate in decisions assuring that services are appropriate to the needs and preferences of the individual, it seems to make no difference to these advocates.

Providing a rationale for policy makers to eliminate costly (but necessary, for many) programs while advancing the "rights" of people with disabilities must be music to the ears of state politicians looking for justification to balance their budgets on the backs of those most in need. A perfect example of this is happening in Maine where the state is poised to slash services to severely disabled adults in the name of independent living.

It is worth repeating that  the DD Act does not fund direct services to people with DD unless the services are incidental to DD Act program activities, nor are programs funded by the act ultimately accountable to or responsible for providing the services that people need.


DD Act Policies annotated:

POLICY.—It is the policy of the United States that all programs, projects, and activities receiving assistance under this title [Title I of the DD Act] shall be carried out in a manner consistent with the principles that—

The first policy or principle listed in the DD Act is this:

1. individuals with developmental disabilities, including those with the most severe developmental disabilities, are capable of self-determination, independence, productivity, and integration and inclusion in all facets of community life, but often require the provision of community services, individualized supports, and other forms of assistance;

This disregards the definition of developmental disabilities that includes people with functional limitations in any or all of the areas listed here. It supposes that much of the DD population is not worth mentioning. It tends to exclude people with severe intellectual disabilities and those with behavioral disabilities with the most severe manifestations of those conditions.

2.   individuals with developmental disabilities and their families have competencies, capabilities, and personal goals that should be recognized, supported, and encouraged, and any assistance to such individuals should be provided in an individualized manner, consistent with the unique strengths, resources, priorities, concerns, abilities, and capabilities of such individuals;

3.   individuals with developmental disabilities and their families are the primary decisionmakers regarding the services and supports such individuals and their families receive, including regarding choosing where the individuals live from available options, and play decisionmaking roles in policies and programs that affect the lives of such individuals and their families;

This means that individuals and their families are of primary importance in determining the services and supports that individuals receive. Federally-funded advocates and DD Act programs do not determine individual needs.

4.   services, supports, and other assistance should be provided in a manner that demonstrates respect for individual dignity, personal preferences, and cultural differences;

5.   specific efforts must be made to ensure that individuals with developmental disabilities from racial and ethnic minority backgrounds and their families enjoy increased and meaningful opportunities to access and use community services, individualized supports, and other forms of assistance available to other individuals with developmental disabilities and their families;

6.   recruitment efforts in disciplines related to developmental disabilities relating to pre-service training, community training, practice, administration, and policymaking must focus on bringing larger numbers of racial and ethnic minorities into the disciplines in order to provide appropriate skills, knowledge, role models, and sufficient personnel to address the growing needs of an increasingly diverse population;

7.   with education and support, communities can be accessible to and responsive to the needs of individuals with developmental disabilities and their families and are enriched by full and active participation in community activities, and contributions, by individuals with developmental disabilities and their families;

This is true with the qualification that “communities”, even with the best of intentions, may not be able to adequately serve everyone, depending on the nature and severity of the person’s disabilities and the resources available.

8.   individuals with developmental disabilities have access to opportunities and the necessary support to be included in community life, have interdependent relationships, live in homes and communities, and make contributions to their families, communities, and States, and the Nation;

Stated without qualification, this is simply not true. There are plenty of examples of communities that do not provide access to opportunities and necessary supports that are adequate to serve people with DD.

9.   efforts undertaken to maintain or expand community-based living options for individuals with disabilities should be monitored in order to determine and report to appropriate individuals and entities the extent of access by individuals with developmental disabilities to those options and the extent of compliance by entities providing those options with quality assurance standards;
Yes, this is very important. If monitoring were given the attention it deserves, it would likely become more clear that a full array of options must be available to serve people with DD.

10.  families of children with developmental disabilities need to have access to and use of safe and appropriate child care and before-school and after-school programs, in the most integrated settings, in order to enrich the participation of the children in community life;
This is true, but it should use wording from the Americans with Disabilities Act regulations on integration: ...access to...“the most integrated settings appropriate to the needs of the individual."

11.  individuals with developmental disabilities need to have access to and use of public transportation, in order to be independent and directly contribute to and participate in all facets of community life; ...
The lack of accessible public transportation is a real barrier to participation in all kinds of activities. Non-public forms of transportation are also important, however, as long as it gets people to where they need to go. Independence and contributing in all facets of community life involve a lot more than public transportation, although overcoming the lack of transportation is a major hurdle.

12.  individuals with developmental disabilities need to have access to and use of recreational, leisure, and social opportunities in the most integrated settings, in order to enrich their participation in community life.

Again, using the phrase from ADA regulations, people with DD need to have access to the most integrated settings appropriate to the needs of the individual  and a full array of options, recognizing that all settings are not appropriate for all individuals.


[This post has been revised several times over the last week. I do not mean to confuse readers. I am just trying to get this right...JB]

No comments: