The DD Act establishes the developmental disabilities network including state councils, protection and advocacy agencies, university centers for excellence, and projects of national significance. The purpose of the DD Act is to ensure individuals with developmental disabilities have access to community services and supports that promote self-determination, independence, productivity, and integration. Key aspects of the DD Act include the definition of developmental disability, 12 policies and principles, areas of emphasis, and requirements for state councils including membership, responsibilities, and developing a 5-year state plan and budget. As council members, the role is governance which focuses on the vision, stakeholders, future, and establishing, monitoring, and evaluating the work of the council as a unified body.

1. The DD Act and Your Role:
What Does It Say and What Does It Mean?
NACDD/ ITACC Chairperson Leadership Training
July 9, 2014
Washington, DC

2. The Developmental Disabilities
Assistance and Bill of Rights Act
of 2000 (The DD Act)
Public Law 106-402
Full DD Act of 2000 available online:
http://bit.ly/DDact2000
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3. Purpose of the DD Act
(Section 101 (b))
• Purpose:
to ensure that people with developmental disabilities
and their families have access to community services,
individualized supports, and other forms of assistance
that promote:
• Self-determination
• Independence
• Productivity
• Integration and inclusion
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4. DD Network
(Section 101 (b) 1-4)
The DD Act establishes the DD Network, which includes:
• State Councils on Developmental Disabilities (DD Councils)
• State Protection and Advocacy Agencies (P&As)
• National Network of University Centers for Excellence in
Developmental Disabilities Education, Research, and
Service (UCEDDs)
• and... Projects of National Significance (PNS)
4

5. 5

6. 12 Policies and Principles of DD Act
(Section 101 (c))
1.People with DD, even the “most severe”, are
capable.
2.People with DD and their families have goals
and abilities.
3.People with DD and their families make the
decisions.
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7. 12 Principles (Continued)
4. Assistance to people with DD should be
respectfully provided based on the individual.
5. People with DD and their families from minority
backgrounds must be able to access community
supports and services.
6. More people from minority backgrounds must
be recruited to work in the DD field.
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8. 12 Principles (Continued)
7. Through education and support, communities can be
accessible to and responsive to individuals with DD
and their families.
8. People with DD have access to opportunities to be
included in the community life (independent
relationships, live in homes and make contributions).
9. Opportunities for people with DD to live in the
community should be maintained and expanded.
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9. 12 Principles (Continued)
10.Families of children with DD need access to
integrated childcare.
11.People with DD need access to and use
transportation.
12.People with DD need access to integrated
recreational and social opportunities in the
community.
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10. Definition of “Areas of Emphasis”
(Section 102 (2))
• Quality Assurance
• Child-care
• Education and early
intervention
• Employment
• Health
• Housing
• Recreation
• Transportation
• Other: Services
available and offered
to individuals in the
community including
formal and informal
supports that affect
quality of life
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11. Definition of “developmental disability”
(Section 102 (8))
The term “developmental disability” (DD) means a
severe, chronic disability of an individual that:
• is attributable to a mental or physical impairment or
combination of mental and physical impairments;
• is manifested before the individual attains age 22;
• is likely to continue indefinitely;
• results in substantial functional limitations in 3 or more of
the following areas of major life activity...
11

12. Subtitle B- Federal Assistance to
State Councils on
Developmental Disabilities
Full DD Act of 2000 available online:
http://bit.ly/DDact2000 12

13. Purpose of the “Council”
(Section 121)
• Purpose:
Engage in advocacy,
capacity building and
systemic change activities
Contribute to a coordinated, consumer and family centered,
consumer and family directed, comprehensive system of
community services, individualized supports, and other
forms of assistance. 13

14. State Plan
(Section 124)
Full DD Act of 2000 available online:
http://bit.ly/DDact2000 14

15. 5 State Plan Requirements
(Section 124 (c))
1. Establish and maintain a Council meeting specific
membership requirements.
• (more details later in Section 125 (b))
2. Designate a State Agency (DSA) to support the Council.
• (more details later in Section 125 (d))
3. Include the results of a review and analysis on
needs being met and unmet needs in the state
for people with DD and their families.
4. Create 5-year goals based on data driven strategic planning.
5. Include assurances (to be covered later in slides). 15

16. State Plan Review and Analysis Requirements
(Section 124 (c) 3)
The results of this review and analysis will inform
what goals you focus on.
Unmet needs are barriers to the desired outcomes:
• Identify needs – What issues are problems
that impact the everyday lives of
individuals with disabilities and their
families?
• Identify barriers- What conditions are blocking or may
interfere with accomplishing the targeted outcome?
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17. State Plan Goals Requirements
(Section 124 (c) 4)
Make sure goals are related to the areas of
emphasis and...
• Are created from the unmet needs of people with DD
and their families that were discovered through state
plan requirement #3 (review and analysis)
• Include a self-advocacy goal for
each year of the 5 year plan
(requires 3 parts)
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18. State Plan Assurances Requirement
(Section 124 c(5) (B-N))
An assurance is a pledge, a guarantee; free
from any doubt.
There are 13 listed assurances (B-N).
However, there are 3 that trigger the most
questions:
(B) Use of Funds
(D) Conflict of Interest
(L) Non Interference
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19. Use of Funds Assurance
(Section 124 c(5)(B))
• The Council...
– Can’t use less than 70% of their funds on goal/ objective activities from the
state plan ((Section 124 c(5)(B)(i)).
– Can’t supplant funds ((Section 124 c(5)(B)(iii)).
– Can’t duplicate or replace services for people with DD ((Section 124
c(5)(B)(iv)).
• The DSA...
– Can require the Council to pay up to half of the entire expenses incurred by the
DSA to support the Council or $50,000 (whichever is less) ((Section 124
c(5)(B)(vi)).
– Can’t receive more than 20% of Council funds ((Section 124 c(5)(B)(vii)).
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20. Conflict of Interest Assurance
(Section 124 c(5)(D))
• A conflict of interest exists when the Council
member or a member of their family appears to
gain or benefit personally from their position on
the Council.
• A conflict of interest can be real or perceived
– A perceived conflict is often more damaging than a
real one since it is much harder to resolve.
– Perceived means that it might not be real, but seems
or appears real.
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21. • Never use the DD Council as a platform for
personal benefit or gain
– Don’t act on behalf of the council without the council
authority
– Don’t take issues discussed at the council meeting
outside the meeting, it is your perception.
Conflict of Interest (continued)
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22. The Council must be free to act:
• The State Plan must “provide assurance that the
designated State agency (DSA) or any other
agency, office or entity of the State, will not
interfere with the advocacy, capacity building
activities, budget, personnel, State plan
development, or plan implementation of the
Council …”
Noninterference Assurance
(Section 124 c(5)(L))
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23. The Council must be free to act:
• The State Plan must “provide assurance that the
designated State agency (DSA) or any other
agency, office or entity of the State, will not
interfere with the advocacy, capacity building
activities, budget, personnel, State plan
development, or plan implementation of the
Council …”
Noninterference Assurance
(Section 124 c(5)(L))
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24. The DSA and Budgets
DSA Cannot:
• apply hiring freezes,
• make the Council reduce its
staff,
• tell Councils they cannot
travel, or
• tell a Council they cannot use
federal funds to carry out
activities under the DD Act.
DSA Can provide:
• Support services
• Fiscal responsibilities
• Records, access and financial
reports
• Non-federal share (In-kind
contributions, contributions of
political subdivisions and
public or private entities and
other variations)
• Assurances
• MOU (on request)
Noninterference Assurance (continued)
(Section 124 c(5)(L))
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25. Council Membership
(Section 125 (b))
Full DD Act of 2000 available online:
http://bit.ly/DDact2000 25

26. Council Membership Explained
(Section 125 (b))
1. Appointments
2. Membership Rotation
3. Representation of individuals with disabilities
4. Representation of Agencies and Organizations
5. Composition of Membership with
Developmental Disabilities
6. Institutionalized Individuals
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27. Council Responsibilities
(Section 125 (c))
Full DD Act of 2000 available online:
http://bit.ly/DDact2000 27

28. Council Responsibilities
(Section 125 (c)2-5)
• Serve as an advocate for individuals with developmental
disabilities (Section 125 (c)2)
• Conduct or support programs, projects and activities that
improve the quality of life of individuals with disabilities
(Section 125 (c)2)
• Develop a state plan (Section 125 (c)4)
• Implement the state plan (Section 125 (c)5)
• Monitor progress of the state plan and adapt it as
necessary and appropriate (Section 125 (c)3)
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29. More Council Responsibilities
(Section 125 (c)7-10)
• Report activities to AIDD (Section 125 (c)7)
• Prepare, approve and implement a budget using the
amount provided to it (Section 125 (c)8)
• Recruit and hire a Director consistent with state law
(Section 125 (c)9)
• Have staff who assist the Council in carrying out its
responsibilities (Section 125 (c)10)
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30. The State DD Council’s Budget
(Section 125 (c)8)
• Reflects your Council’s state plan aka the state
plan in numbers.
• The budget is the plan of how a Council will
fund their state plan goals and objectives
• Is for a specific period of time
—the fiscal year, or calendar year
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31. Tying It All Together...
31

32. The Council Members Govern
• Govern the activities of the Council
• Governance is the role you have assumed
accepting the position of Council member
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33. Governance vs. Management
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What we want to
be?
Where do we want
to go?
Making it
happen!

34. Governance
• Focused on the vision (the BIG picture)
• Asks you to keep focused
On the whole
On stakeholders
On the future
34

35. Governance
• The tasks and responsibilities to…
 establish,
• Develop and approve a state plan and budget
 monitor,
• Review progress of state plan and budget
 and evaluate the work of the DD Council.
35

36. Governance
• Working as a unified body
• Speaking with one voice
• Listening to stakeholders
• Maintaining the passion that underpins your
mission (Principles of the DD Act!)
36

37. Keys to Thoughtful Discussions
• Weigh beliefs and assumptions against the facts
• Listen to others and give them feedback
• Suspend judgment until all the facts are considered and understood
• Adjust opinions when new facts are found
• Look for proof
• Examine problems closely
• Reject information that is incorrect or irrelevant
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38. DD Council Members Should...
• Open doors in the community
• Evaluate yourself
• Be a good steward of public funds
• Keep touch with history and core values of the
organization
– What is your DD Council’s mission and vision?
38

39. DD Council Members ALSO Should...
• Keep up-to-date on developments in the disability
field
• Prepare for and attend Council, committee and
workgroup meetings
• Ask questions
• Take responsibility and follow-through on a given
assignment
39

40. Qualities DD Council Members Should
Possess
• Honesty
• Visionary
• Flexible
• Sensitivity to and
tolerance of
differing views
• Responsiveness
40
• A patient approach
• Personal integrity
• Concern for the
Council’s
development
• Sense of humor

41. Director
• Reports to the Council
• Supervises the staff
• Prepares and maintains reports to remain in
compliance with federal law (DD Act)
• Represents the Council in official capacity
• Liaison between the DSA and the Council
• Ensures expenditures are within the budget
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42. Director and Staff
The DD Act says:
• The Council shall hire a Director and supervise and
annually evaluate the Director.
• The Director shall hire and maintain types of staff to
carry out the functions of the Council. Staff must be
qualified by training and experience.
• The Director supervises and evaluates Council staff.
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43. Council Staff
• Provides continuity for Council
initiatives
• Provides the Council with a
foundation of qualified professionals
to carry forward the work of the Council
• Oversees the day to day operations
– Ensures that the Council can do their job, for example:
• Assist in the development of reports, work plans and objectives
• Arrange meetings and logistics
• Staff the committees and workgroups
• Prepare meeting minutes
• Represent the Council at certain community meetings
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44. Joint Planning Responsibilities
Council
• Approve long range goals
• Approve annual objectives
• Finalize and approve the budget
Staff
• Support the process of planning
• Formulate annual objectives
• Prepare performance reports on achievements of goals and objectives
44

45. Remember…..
• The role of the Council member is to provide
leadership and direction (GOVERNANCE) for the
Council
• The role of the staff is to “do the work”
(MANAGEMENT).
• The Executive Director is the staff member that
works directly for the Council. All other staff
work for the Executive Director.
• Staff are hired to implement the Council’s five
year state plan
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46. Director
DD Council Members
Staff
46

47. Questions?
Rita Stevens
Rita.Stevens@acl.hhs.gov
202-260-6168
Kathy McAllister
Kathy1952@verizon.net
Esmé Grant
EGrant@nacdd.org
202-506-5813
Hillary Spears
Hspears@nacdd.org
202-506-5813
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