Monday, December 7, 2015

The DD Act : Rights of Individuals with Developmental Disabilities

Here is a link to the “Rights of Individuals with Developmental Disabilities” as a Word document from the DD Act of 2000. The following is my annotated version of the Bill of Rights.

IN GENERAL.—Congress makes the following findings respecting the rights of individuals with developmental disabilities...

These findings list "the rights of individuals with developmental disabilities” [emphasis added]. Some disability rights advocates have made assertions about group or collective rights of people with DD based on generalizations about their characteristics and capabilities. For instance, we often see the assertion that people with developmental disabilities have the right to live in “the community”, as opposed to an institution. This is generally true, unless the individual’s need for appropriate services in a safe and accommodating environment, i.e. an institution or other specialized setting, is preferable and less restrictive than living in an inadequate community setting that does not meet the individual's needs.
  • Individuals with developmental disabilities have a right to appropriate treatment, services, and habilitation for such disabilities, consistent with section 101(c). [section 101(c) refers to the Policy and principles for carrying out programs and activities under the DD Act.]
  • The treatment, services, and habitation for an individual with developmental disabilities should be designed to maximize the potential of the individual and should be provided in the setting that is least restrictive of the individual’s personal liberty.
The term habilitation is not defined in the DD Act, but the Website managed by the U.S. Centers for Medicare and Medicaid Services,, defines it as “Health care services that help you keep, learn, or improve skills and functioning for daily living. Examples include therapy for a child who isn't walking or talking at the expected age. These services may include physical and occupational therapy, speech-language pathology, and other services for people with disabilities in a variety of inpatient and/or outpatient settings.”

The Federal Government and the States both have an obligation to ensure that public funds are provided only to institutional programs, residential programs, and other community programs, including educational programs in which individuals with developmental disabilities participate, that— 

provide treatment, services, and habilitation that are appropriate to the needs of such individuals;

and meet minimum standards relating to— 
  • provision of care that is free of abuse, neglect, sexual and financial exploitation, and violations of legal and human rights and that subjects individuals with developmental disabilities to no greater risk of harm than others in the general population;
  • provision to such individuals of appropriate and sufficient medical and dental services;
  • prohibition of the use of physical restraint and seclusion for such an individual unless absolutely necessary to ensure the immediate physical safety of the individual or others, and prohibition of the use of such restraint and seclusion as a punishment or as a substitute for a habilitation program;
  • prohibition of the excessive use of chemical restraints on such individuals and the use of such restraints as punishment or as a substitute for a habilitation program or in quantities that interfere with services, treatment, or habilitation for such individuals; and
  • provision for close relatives or guardians of such individuals to visit the individuals without prior notice.
Notice that there is no assumption here that everyone will live “in the community” or that there are any restrictions on people with DD participating in programs in any particular setting, as long as the individual is provided with appropriate care and treatment and that there are prohibitions against certain kinds of mistreatment listed here. Also note, that close relatives and guardians are recognized as having a role in assuring the safety and well being of people with DD.

All programs for individuals with developmental disabilities should meet standards—

  • that are designed to assure the most favorable possible outcome for those served; and
  • in the case of residential programs serving individuals in need of comprehensive health-related, habilitative, assistive technology or rehabilitative services, that are at least equivalent to those standards applicable to intermediate care facilities for the mentally retarded, promulgated in regulations of the Secretary on June 3, 1988, as appropriate, taking into account the size of the institutions and the service delivery arrangements of the facilities of the programs;
in the case of other residential programs for individuals with developmental disabilities, that assure that—
  • care is appropriate to the needs of the individuals being served by such programs;
  • the individuals admitted to facilities of such programs are individuals whose needs can be met through services provided by such facilities; and
  • the facilities of such programs provide for the humane care of the residents of the facilities, are sanitary, and protect their rights; and
  • in the case of nonresidential programs, that assure that the care provided by such programs is appropriate to the individuals served by the programs.
Notice again that the emphasis is on appropriate care and services. The DD Act does not define appropriate, but most programs providing services to individuals with DD require an individual plan of services written with the participation of the individual with DD and his or her family and legal guardian, if there is one. This determination of specific services, care, and treatment, that includes the individual's right to appeal decisions they disagree with, should be considered a sufficient description of “appropriate” care and services.

And finally,

CLARIFICATION. —The rights of individuals with developmental disabilities described in findings made in this section shall be considered to be in addition to any constitutional or other rights otherwise afforded to all individuals.

The rights listed here do not in any way restrict the rights afforded to all individuals.

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