Historical Analysis of Developmental Disabilities Legislation

P.L. 91-517
P.L. 94-103
P.L. 95-602
P.L. 97-35
Reconciliation Act
P.L. 98-527
P.L. 100-146
P.L. 101-496
P.L 103-230
P.L. 104-183
P.L. 106-402
LEGISLATION: P.L. 106-402 (2000)
A. DEFINITION OF DEVELOPMENTAL DISABILITY: There are 3.2 to 4.5 million people with developmental disabilities. The definition changed for infants and young children from birth to age nine. The key question is, "Does the individual have a high probability of meeting the criteria later in life?" Nothing in the law precludes assisting individuals with other disabilities.
B. PROGRAM: The Council name is changed to Council on Developmental Disabilities. The purpose changes to advocacy, capacity building and systemic change that contribute to a coordinated consumer-and-family-centered, consumer-and-family-directed comprehensive system that includes needed community services, individualized supports, and other forms of assistance that promote self determination for individuals with developmental disabilities and families.
C. PRIME CONCEPTS: • Disability is a natural part of the human experience
• Areas of emphasis replace priorities
• Recognizes greater risk of abuse, neglect, exploitation, and violation of rights
• Unserved and underserved groups are mentioned
• Cultural competence
• Waiting list
• Capabilities and competence
• Trained workforce
D. ALLOTMENT FORMULA: The hold harmless provision was eliminated (by oversight and was restored in 2004). The funding formula includes the state population, extent of need for services, and financial need. The minimum allotment is set at $400,000.
E. USE OF FUNDS: A total of 70 percent of funds must be spent on areas of emphasis.
F. SERVICES: Quality assurance, education, early intervention, child care, health, employment, housing, transportation, recreation, and community supports.
G. ADMINISTRATION: • The Council must have 60 percent people with developmental disabilities and families: 1/3 individuals with developmental disabilities; 1/3 parents or guardians of children with developmental disabilities or immediate relatives or guardians of adults with mental impairing developmental disabilities who cannot advocate for themselves; and 1/3 a combination of above.
• At least one member must represent someone who resides or resided in an institution or is an adult who resides or resided in an institution.
• Goals must be reviewed annually.
• A conflict of interest policy must be in place.
• The designation and redesignation of state agency procedures is outlined.
• The Council cannot be in any agency that provides or funds services for people with developmental disabilities.
H.  STATE PLAN: Councils now have a five-year planning cycle rather than a three-year cycle. A comprehensive review and analysis remains in place. Federal programs must be described. Adequacy of community services. Waiting list data must be reported There must be collaboration with the University Center on Excellence and the Protection and Advocacy Agency. Goals are identified for the areas of emphasis Specific goals are identified for self advocacy.
I. AFFIRMATIVE ACTION: Section 107 addresses affirmative action to employ qualified individuals with disabilities; same as previous law.
J. EVALUATION: An annual Program Performance Report (PPR) must be submitted by January 1st.

The Government Performance and Results Act includes several indicators of progress. Congress specifically mentions the outcomes of independence, productivity, self determination, integration, and inclusion (IPSII).

The definition of self determination is added and is defined as personal advocacy, and leadership skills.
K. BILL OF RIGHTS: A section was added:
"Provision of care that is free of abuse, neglect, sexual and financial exploitation, and violations of legal and human rights and that subject individuals with developmental disabilities to no greater risk of harm than others in the general population."

The phrase "assistive technology" was added to the residential programs section.
L. HABILITATION PLANS: Individualized services must be assured.
Didn't review for this chronology.
N. REVIEW PLANS: An annual review of state plans but not individual plans.
This section is retained as an assurance.
Each Council shall report on progress including goals, strategies, self advocacy, customer satisfaction, ICF-MR deficiency reports, waiver evaluation, how funds were spent, and annual report dissemination.
A new assurance was added that requires participation in any state Quality Assurance system.
The name is changed to University Centers for Excellence on Developmental Disabilities Education, Research, and Services (UCE). UCEs provide pre-service education, community services, research, dissemination, national technical assistance, and national data collection.
S. OTHER: Title II. Family Support and Title III. Direct Support Workers are added.
T. ASSURANCES: Program accessibility, minority participation, and noninterference by designated state agency are specifically identified.