The document provides data and outcomes from DD (developmental disabilities) Councils for fiscal years 2008-2012. It includes numbers of people trained in self-advocacy and systems advocacy, programs and policies created, and members of the public and policymakers educated. Examples are given of Council activities promoting community living, employment, early intervention, and self-advocacy in different states. Budget justifications submitted to federal agencies cite Council impact and exceeding targets for individuals' independence and community integration.

1. DD Councils’ Data
Syed Rafiuddin
July 9th, 2014

2. Councils’ Reports and Data
• Five Year State Plan
– Yearly Amendments
• Program Performance Report (PPR)
• Council Reports Data Elements
– State of the State Update
– Goal and Objective Outcomes (Objective met or not met)
• Outcomes (numerical outcomes and narratives)
– Collaborations
• Partners
• Outcomes
• Barriers

3. DD Councils’ Outcome Measures
11/26/2013
Performance Measure Outcomes
FY 2012 Post rev. FY 2011 Variance
Performance Measure 1.1 and 1.2 ( Self-advocacy / Advocacy)
FY 2011 Vs.
FY 2012
SA01- People trainedin area relatedto
goal/objective 162,531 84,697 92%
SA02-People trainedin leadership, self-advocacy,
andself-determination 45,243 29,654 53%
SA03-People trainedin system advocacy 49,091 14,911 229%
SA04:People active in systems advocacy 65,477 17,317 278%
SA05:People attainedmembershipon
public/private bodies andleadershipcoalitions 3,093 3,547 -13%
SA06a: Other Self-advocacy measure 24,689
SA06b: Other Self-advocacy measure 10,473
SA06c: Other Self-advocacy measure 7,850
Performance Measure 2.1 ( Systems Change)
SC01: Program/policies createdor improved 3,656 404 805%
SC02: Number of organizations involvedin
Coalitions/Networks/Partnerships 17,459 3,850 353%
SC03: Organization engagedin systems change
efforts 13,385
SC04: Number of public policymakers educated 28,853 16,660 73%
SC05: Members of general public reached 25,072,688 42,247,683 -41%
SC06a: Other systems change measure 49,909
SC06b: Other systems change measure 29,379
SC06c: Other systems change measure 2,273
DDC FY 2012 PPR

4. DD Councils’ Outcome Measure
0
20,000
40,000
60,000
80,000
100,000
120,000
140,000
160,000
180,000
FY 2008 FY 2009 FY 2010 FY 2011 FY 2012
66,189
73,540 68,356
84,697
162,531
SA01- People trained in area related to goal/objective

5. DD Councils’ Outcome Measure
0
5,000
10,000
15,000
20,000
25,000
30,000
35,000
40,000
45,000
50,000
FY 2008 FY 2009 FY 2010 FY 2011 FY 2012
31,260
29,435
36,356
29,654
45,243
SA02-People trained in leadership, self-advocacy, and self-
determination

6. DD Councils’ Outcome Measure
0
500
1,000
1,500
2,000
2,500
3,000
3,500
4,000
FY 2008 FY 2009 FY 2010 FY 2011 FY 2012
3,105
2,092
2,463
3,547
3,093
SA5- People attained membership on public/private bodies and
leadership coalitions

7. Examples of Data use:
Accountability:
 Government Performance and Results Act (GPRA) outcome measures
 Budget Justification data
Progress:
 Annual Report to The Congress and The President
 Ad-hoc reports and responses to Congressional and other Federal
agencies
Analysis:
 Review of AIDD programs and grantees, effectiveness of programs
 Best practices
 Barriers identification

8. Budget Justification submitted to ACL and HHS:
The State Councils have a significant impact upon promoting self-sufficiency and
community living for persons with developmental disabilities. Due to increased
technical assistance and guidance, Councils reported that in FY 2012, 14.33 percent
of individuals nationwide with developmental disabilities were independent, self-
sufficient, and integrated into the community as a result of their efforts, exceeding
the FY 2012 target of 13.79 percent. To receive funds, each State and Territory must
have an established DD Council as prescribed under the Developmental Disabilities
Assistance and Bill of Rights Act (“DD Act”). Examples of State Council activities
include:

9. Community Living: The Illinois Developmental Disabilities Council published
“Illinois at the Tipping Point” in March 2012. This report, along with the 2008 report
“Blueprint for System Redesign in Illinois” have been recognized throughout Illinois as
a major work that has influenced a number of policy changes, specifically the
“Rebalancing Initiative” announced at the Governor’s budget address on February 22,
2012. The Governor stated that two state institutions would be closed and he reiterated
a commitment to building community capacity. The Governor’s office requested that
the Council coordinate advocacy efforts to ensure the successful transition of
individuals from state institutions into the community. Through collaboration with
statewide organizations, a work group was formed and a coordinated plan was
developed. The first of the two institutions closed on November 29, 2012 and one
hundred and eighty three people with developmental disabilities are now living in the
community. As part of the plan for transition, the Council funded an initiative of peer-
to-peer mentoring for individuals transitioning. A curriculum was developed and self-
advocates from the Alliance worked alongside staff to provide support for individuals as
they thought about and dreamed of a life beyond the institution.

10. Transition/Employment: The Kansas Developmental Disabilities Council provides
funding to Project SEARCH. Project SEARCH provides real-life work experience to help
youth with significant disabilities make successful transitions from school to adult life.
The Kansas Project SEARCH programs continue to excel with an overall 75%
employment success rate for students with developmental disabilities. All six of the first
year SEARCH teams received national outcome awards at the 2013 Project SEARCH
annual conference. They have expanded to 7 active project SEARCH sites at: University
of Kansas, Kansas State University, Butler Community College, Sedgwick County
Government, Newton Medical Center, Salina Regional Medical Center, and Lawrence
Memorial Hospital. Since inception, the project had more than 150 students participate in
Project SEARCH, all with the goal of securing competitive, integrated employment after
graduation. SEARCH interns have been hired in jobs working 15-40 hours per week and
earning $7.25 an hour up to $12 an hour. Three additional locations are planned for fall of
2014 to include: Washburn University, McConnell Air Force Base, and the Hampton
Inn/Kansas Star Casino Convention Complex. In addition to those three sites, there are
four more communities who are working on applications to begin projects in their area.
The Council plans to expand the program to include a non-school program targeted
towards young adults

11. Early Intervention: The Maine Developmental Disabilities Council has engaged in and
supported a variety of collaborative state level efforts to raise awareness about
developmental and behavioral screening. Activities include awareness campaigns and
training initiatives targeted at twelve pediatric and family practices that served an
estimated 20,000 children with Medicaid coverage. Their combined efforts have facilitated
significant, long-term systemic improvements towards early identification and coordinated
care for young children with Autism Spectrum Disorder (ASD). Recent studies showed that
in Maine children with ASD were more likely to be identified at a younger age and the
developmental and autism screening rates more than doubled in the targeted sites

12. Self-Advocacy: The Maryland Developmental Disabilities Council continues to support
self-advocacy through Maryland's statewide self-advocacy group, People on the Go of
Maryland (POG). Through two grants funded by the Council, People on the Go of
Maryland (POG), a self-advocacy organization led by self-advocates, made strides in 2012
toward increasing the involvement of local self-advocacy groups in statewide advocacy
efforts. POG continued to advocate for community supports, educate facilitators, and
support local self-advocacy groups in becoming active in systems advocacy. POG educated
1200 students and school staff about disability awareness by presenting at schools in four
different counties across the state. In their youth advocacy work, POG presented at the
Maryland Transitioning Youth Conference, the Youth Leadership Forum, and Ready at 21 a
non-profit organization dedicated to transitioning youth to college, work, and life. POG
also presented at several other conferences about self-advocacy and self-determination
including The Arcs annual conference, MD Association of Community Services, National
Disability Rights Network and TASH. With the support of an outside consultant funded by
the Council, POG revised its structure, created job descriptions, and developed new
Bylaws to strengthen the organization and foster its autonomy. POG supported the 2012
Legislative Internship. A person with a significant developmental disability was chosen by
POG leadership and mentored by their Public Policy Coordinator on how to prepare and
submit testimony on bills of importance to people with developmental disabilities

13. Administration on Intellectual and Developmental Disabilities (AIDD)
Administration for Community Living (ACL)
One Massachusetts Avenue N.W.
Washington, D.C. 20201
http://www.acl.gov/Programs/AIDD/Index.aspx