Speaking out for People with
 Intellectual and Developmental Disabilities

Defining Choice

Federal Law Requires Residential Choice!
The Developmental Disabilities Assistance and Bill of Rights Act, 42 U.S.C. §2001(c)(3)
(c) POLICY. -It is the policy of the United States that all programs, projects, and activities receiving assistance under this title shall be carried out in a manner consistent with the principles that-
* * *
(3) individuals with developmental disabilities and their families are the primary decision makers regarding the services and supports such individuals and their families receive, including regarding choosing where the individuals live from available options, and play decision-making roles in policies and programs that affect the lives of such individuals and their families.
Individuals with Disabilities Education Act Regulation
34 C.F.R. § 300.551 Continuum of Alternative Placements (a) Each public agency shall ensure that a continuum of alternative placements is available to meet the needs of children with disabilities for special education and related services.
“Continuum” shall include “instruction in regular classes, special classes, special schools, home instruction, and instruction in hospitals and institutions.” 34 CFR §300.551(b).
Medicaid Law:
42 U.S.C. §1396n(c)(2)(C)
A Medicaid Home and Community-Based Waiver shall not be granted unless the state provides satisfactory assurances that –
such individuals who are determined to be likely to require the level of care provided in a hospital, nursing facility or intermediate care facility for the mentally retarded are informed of the feasible alternatives, if available under the waiver, at the choice of such individuals, to the provision of inpatient hospital, nursing facility services or services in an intermediate care facility for the mentally retarded.
Medicaid regulation:
42 C.F.R. §441.302
(d) When a recipient is determined to be likely to require the level of care provided in a hospital, nursing facility, or intermediate care facility for the mentally retarded, the recipient or his or her legal representative will be –
(1) Informed of any feasible alternatives available under the waiver, and
(2)Given the choice of either institutional or home and community-based services.
Medicaid Regulation:
42 C.F.R. §441.303
The [state] agency must furnish CMS with sufficient information to support the assurances required by §441.302, including
* * *
(d) A description of the agency’s plan for informing eligible recipients of the feasible alternatives available under the waiver and allowing recipients to choose either institutional services or home and community-based services.
Penny Thompson, (former) Acting Director, Center for Medicaid and State Operations, HHS, in a letter to Carole Sherman (February 5, 2001) (excerpt):
Federal Medicaid policy supports an individual’s right to choose where they receive Medicaid services for which they are eligible. For example, States are required by Federal law to offer individuals who are eligible for Medicaid home and community-based waiver services the choice between community-based care under the waiver program or institutional services.
Olmstead v. L.C.,
119 S. Ct. 2176 (1999)
Olmstead set forth a three part test to determine if community placement is appropriate (i.e., institutionalization is unjustified):
“(a) the State’s treatment professionals have determined that community placement is appropriate;
(b) the transfer from institutional care to a less restrictive setting is not opposed by the affected individual; and
(c) the placement can be reasonably accommodated, taking into account the resources available to the State and the needs of others with mental disabilities.” 119 S. Ct. at 2181 (emphasis added).
A majority of Justices in Olmstead recognized an ongoing role for publicly and privately-operated institutions:
“We emphasize that nothing in the ADA or its implementing regulations condones termination of institutional settings for persons unable to handle or benefit from community settings...Nor is there any federal requirement that community-based treatment be imposed on patients who do not desire it.” 119 S. Ct. at 2187.
“The Olmstead “choice” provision and guardianship rights,” by Patricia Williams, Esq., September 6, 2000 (The Voice, Spring 2001)
Although there has been much discussion within the disability community of the meaning of “choice” and how “choice” can be exercised by persons with severe developmental disabilities, there has been no genuine legal challenge to the authority of parents of minor children and guardians or conservators of adults with developmental disabilities to be primary decisionmakers in those areas recognized by competent courts of jurisdiction.
Webster’s dictionary
Choice n 1: the act of choosing: SELECTION; 2: the power or opportunity of choosing: OPTION; 3: the best part;  4: a person or thing selected;  5: a variety offered for selection.
Glossary of Acronyms
ADA:            Americans with Disabilities Act
C.F.R.:         Code of Federal Regulations
S.Ct.:            Supreme Court
U.S.C.:         United States Code (federal statutes)