NGCDD Council Member Guide

For people appointed to serve or interested in serving on a Council for Developmental Disabilities

This guide was adapted for Nevada from the ITACC Council Member Guide. It provides information about the role and responsibilities of a NGCDD Council Member.

This project was supported, in part by grant number 90DN0292, from the U.S. Administration for Community Living, Department of Health and Human Services, Washington, D.C. 20201. Grantees undertaking projects under government sponsorship are encouraged to express freely their findings and conclusions. Points of view or opinions do not, therefore, necessarily represent official Administration for Community Living policy.

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ContentsWhat is the purpose of a Developmental Disabilities (DD) Council?.....................3What is the Developmental Disabilities Act (DD Act)?...........................................4

Main values in the DD Act (PL 106-402)............................................................4Definition of Developmental Disability (DD)...........................................................5Definition of Intellectual Disability (ID)...................................................................5What is the difference between Developmental Disability (DD) & Intellectual Disability (ID)?.......................................................................................................5Government Agencies...........................................................................................6

How does it all fit together?................................................................................7What is the DD Council’s relationship with the Administration on Intellectual and Developmental Disabilities (AIDD)?.......................................................................7What are the responsibilities of a DD Council?.....................................................8Who are the Council Members?..........................................................................10Basic Responsibilities of a DD Council Member..................................................11The Council Budget.............................................................................................14What is the State Plan?.......................................................................................15

Areas of Emphasis...........................................................................................16Tools (strategies) a DD Council can use to Implement State Plan......................16Tools (strategies) a Council cannot use:.............................................................17What is a Designated State Agency (DSA)?.......................................................15Why is the independence of the Council important?...........................................18What else do I need to know about my State/Territory DD Council?...................19Appendices..........................................................................................................21

1. History of DD Councils.................................................................................21Other Disability Laws That Might Be Helpful To Know About...........................232. Meeting basics..............................................................................................243. Resource Web Sites.....................................................................................25

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What is the purpose of a Developmental Disabilities (DD) Council?

ACRONYM ALERT: Acronyms are initials that stand for a certain word. DD means Developmental Disability

The purpose of the DD Council is to help people with developmental disabilities to use self-determination, be independent, be productive and be integrated and included in all parts of community life. Councils on Developmental Disabilities are in every State and select US Territories. DD Council members serve as volunteers and are appointed by the state governor to represent and advocate for people with developmental disabilities and their families.

Before the first passage of the Developmental Disabilities Act in 1970, families received almost no help, children could not attend schools, and many people were sent to State institutions for life. Over the past 40 years, DD Councils have helped to bring about some remarkable changes.

While some DD Act programs provide direct services to individuals, the 56 State Councils on Developmental Disabilities (DD Councils) are designed to take a big picture approach to create structural change with a long-term impact.

DD Councils are designed to be operated by and for the developmental disability community. Every five years, each council takes a comprehensive look at the needs of individuals with developmental disabilities in the state or territory and develops a five-year plan of action to promote self-determination, integration, and inclusion.

DD Councils seek to create positive change through advocacy, systems change, and capacity building. They provide training and technical assistance to advocates, families, and service providers. They bring together businesses, service providers, agencies, policy-makers, and community groups to find solutions to persistent problems. They develop and test innovative new programs and service models. Most importantly, DD Councils bring the voices of individuals with developmental disabilities to the policy-makers whose decisions impact their lives.

Sampling of DD Council projects: Partners in Policymaking   was developed by the Minnesota Governor’s Council on

Developmental Disabilities in 1987 to empower people with developmental disabilities and their family members to become leaders and advocates. Since then, more than 21,000 have completed the program in the U.S. and more than 2,000 have participated internationally Watch a self-advocate describe what the program means   .

The DC Developmental Disabilities Council   collaborates with local health and community-based stakeholders to incorporate the functional and accessibility needs of DC residents with developmental disabilities in emergency planning.

Many DD Councils participate in Project SEARCH   , a program which uses real-life work experience to help youth with disabilities make successful transitions from school to adult life.

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Through its Real Communities   program, the Georgia Council on Developmental Disabilities brings people with and without disabilities together for projects to improve the community. Watch the program in action.

Navigating Your Way   is an eight-part video series developed by the Washington State Developmental Disabilities Council to provide guidance and identify resources for individuals with developmental disabilities of all ages and their families.

What is the Developmental Disabilities Act (DD Act)?

The Developmental Disabilities Assistance and Bill of Rights Act of 2000 Public Law 106-402 (usually called the DD Act) is federally implemented by the Administration on Intellectual and Developmental Disabilities.

Title I, Subtitle B in the DD Act explains the function of a Council. This title says that DD Councils must include and support people with developmental disabilities and their families to take part in the design of and have access to needed community services and individualized supports. These include other forms of assistance that promote self-determination, independence, productivity, integration and inclusion in all parts of community life.

Main values in the DD Act (PL 106-402)

Independence – to have control Productivity – to work or make other contributions to a household or community Integration – to have the right to the same opportunities, services, and community

resources as other people Inclusion – to fully take part in learning, living, working, and other community activities

In 1963, individuals with developmental disabilities faced exclusion from many spheres of public and private life, including most schools and community spaces. Many people spent most of their lives in large, state-run institutions. These institutions were often grossly underfunded and reports of systemic abuse and neglect were common.It is in this context that President John F. Kennedy signed the law now known as the Developmental Disabilities Assistance and Bill of Rights Act (DD Act). https://www.acl.gov/node/106

Since the DD Act was enacted, it has come to represent a fundamentally different vision of what it means to live with a developmental disability. It is a vision rooted in the belief that “disability is a natural part of the human experience that does not diminish the right of individuals with developmental disabilities to live independently, to exert control and choice over their own lives, and to fully participate in and contribute to their communities through full integration and inclusion in the economic, political, social, cultural, and educational mainstream of United States society.”

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How the DD Act advances a vision of inclusion

DD Act programs in every state and territory empower individuals with developmental disabilities and their families to help shape policies that impact them. DD Act programs conduct important research and test innovative new service delivery models. They work to bring the latest knowledge and resources to those who can put it to the best use, including self-advocates, families, service providers, and policymakers. DD Act programs also investigate cases of abuse and serve as advocates for individuals with developmental disabilities and their families.Learn more about the specific programs and initiatives made possible by the DD Act and the difference they have made for individuals with developmental disabilities below.

Definition of Developmental Disability (DD)

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: Self-care Receptive and expressive language. LearningMobilitySelf-direction.Capacity for independent livingEconomic self-sufficiency and reflects the individual’s need for a combination and sequence of special, interdisciplinary, or generic services, individualized supports, or other forms of assistance that are of lifelong or extended duration and are individually planned and coordinated.

Definition of Intellectual Disability (ID)

Intellectual disability is a disability characterized by significant limitations both in intellectual functioning(reasoning, learning, problem solving) and in adaptive behavior, which covers a range of everyday social and practical skills. This disability originates before the age of 18.

What is the difference between Developmental Disability (DD) & Intellectual Disability (ID)?

"Developmental Disabilities" (DD) is an umbrella term that includes intellectual disability but also includes other disabilities that are apparent during childhood. DD are severe chronic disabilities that can be cognitive or physical or both. The disabilities appear before the age of 22 and are likely to be lifelong. Some developmental disabilities are largely physical issues, such as cerebral palsy or epilepsy. Some individuals may have a condition that includes a physical and intellectual disability, for example Down syndrome or fetal alcohol syndrome. Intellectual disability encompasses the “cognitive” part of this definition, that is, a disability that

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is broadly related to the thought process. Intellectual and other developmental disabilities often occur together. (Source, AIDD)

Government Agencies

ACRONYM ALERT: UCEDD means University Centers for Excellence in Developmental Disabilities

Education P & A means Protection & Advocacy System DHHS means The United States Department of Health and Human Services ACF means Administration on Children and Families ACL means Administration on Community Living AOD means Administration on Disabilities AIDD means the Administration on Intellectual and Developmental Disabilities U.S. means United States

The Department of Health and Human Services (DHHS) is the United States (U.S.) government's main agency for protecting the health of all Americans and provides essential human services, especially for those who are least able to help themselves.

DHHS includes more than 300 programs. One of those is the Administration on Community Living (ACL). ACL is comprised of the following agencies, which report directly to the Administrator:

Administration on Aging Administration on Disabilities Center of Integrated Programs Center for Management and Budget Center for Policy and Evaluation National Institute on Disability, Independent Living, and Rehabilitation Research

The Administration on Disabilities is headed by a Commissioner, who reports directly to the ACL Administrator, and a Deputy Commissioner who also serves as Director of Independent Living. Reporting directly to the Commissioner and Deputy Commissioner are the following offices:

Administration on Intellectual and Developmental Disabilities (AIDD) Independent Living Administration

The Administration on Intellectual and Developmental Disabilities (AIDD) is the U.S. Government organization responsible for seeing that the Developmental Disabilities Assistance and Bill of Rights Act of 2000, known as the DD Act, is put into action. AIDD, its staff and programs, are part of the Administration for Community Living, of the U.S. Department of Health and Human Services.

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How does it all fit together?

What is the DD Council’s relationship with the Administration on Intellectual and Developmental Disabilities (AIDD)?

AIDD develops program regulations and provides technical assistance and guidance to state programs. AIDD Central office staff is assigned to assist DD Councils, annually sponsoring a Technical Assistance Institute for Councils on Developmental. All DD Council State plans and fiscal and program reports are submitted to and approved by AIDD. The DD Council reporting information is used by AIDD to develop reports to Congress.

AIDD manages three national grant programs authorized by the Developmental Disabilities Assistance and Bill of Rights Act (DD Act). They are commonly called the Developmental Disabilities Network. The three programs are:

1. DD Councils (the one you are now a member of).

2. Protection and Advocacy Program (P & A’s). The P&A protects the legal and human rights of all people with developmental disabilities.

3. University Centers for Excellence in Developmental Disabilities Education (UCEDD) UCEDD’s perform interdisciplinary training, community service, technical assistance, research, and information dissemination activities.

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DHHSACLAOD

AIDD

DD Councils

What are the responsibilities of a DD Council?

Promote and support advocacy, systems change and capacity building for people with developmental disabilities and their families.

Advocacy

The DD Act defines “advocacy” as an active support of policies and practices that promote self-determination and inclusion in the community and workforce for individuals with developmental disabilities and their families.

Advocacy is mandated for all Councils by the DD Act to address 3 major requirements: 1) establish or strengthen a program for the direct funding of a State self-advocacy organization led by individuals with developmental disabilities 2) support opportunities for individuals with developmental disabilities who are considered leaders to provide leadership training to individuals with developmental disabilities who may become leaders; 3) support and expand participation of individuals with developmental disabilities in cross-disability and culturally diverse leadership coalitions.

NOTE: the DD Act does not mandate Councils to fund a statewide self-advocacy organization. Councils may choose to support advocacy in other ways in addition to complying with the DD Act mandate such as:

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1) Advocating for inclusive services & supports by participating on boards and coalitions that address issues important to people with developmental disabilities and their families.

2) Advocating public policy and laws that support the rights of people with developmental disabilities and their families

3) Training parents of children with developmental disabilities about education rights (IDEA) and how to advocate for their child’s inclusive education.

Systems Change

According to the DD Act, “systems change activities” means a sustainable, transferable and replicable change in some aspect of service or support availability, design or delivery that promotes positive or meaningful outcomes for individuals with developmental disabilities and their families.

Systems change can take collaboration among many different agencies or within one agency. It must involve the community and stakeholders. Systems change activities taken on by DD Councils should result in laws, regulations, policies, practices or organizational changes that are person centered and directed or family-centered and directed and increase access to needed services and supports.

Capacity Building

According to the DD Act, “capacity building activities” means activities (e.g. training and technical assistance) that expand and/or improve the ability of individuals with developmental disabilities, families, supports, services and/or systems to promote, support and enhance self-determination, independence, productivity and inclusion in community life.

Capacity building can be individual/family, organizational or both. Example: Sheltered Workshop to Community Employment service providers trained on how to support people with DD to obtain employment in the community employment services are now person-directed and community based.

Support programs, projects and activities that improve the quality of life for people with disabilities.

Develop and put into action a 5-year State plan.

Watch the progress of the 5-year State plan and make changes as necessary.

Review the designated state agency from time to time.

Report DD Council activities to AIDD.

Prepare, approve, and put a budget into action annually.

Hire an Executive Director, evaluate the Executive Director yearly following state laws and processes.

Develop and monitor grants and contracts.

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Who are the Council Members?

60 percent of the all Council members must be:

People with developmental disabilities.

Parents or guardians of children with developmental disabilities.

Immediate relatives or guardians of adults with intellectual disabilities who cannot speak for themselves.

In addition, these Council members cannot be a managing employee of an agency that receives money from the Council.

Of the members of the Council described above:

1 /3 must be individuals with developmental disabilities.

1 /3 must be parents or guardians of children with developmental disabilities or immediate relatives or guardians of adults with developmental disabilities.

1 /3 must be a combination of individuals with developmental disabilities or family members of people with developmental disabilities.

At least one DD Council member must be an immediate relative or guardian of an individual with a developmental disability who lives or used to live in an institution or the member could be an individual with a developmental disability who lives or used to live in an institution.

The other members of the DD Council speak and act for agencies and organizations listed below:

Rehabilitation Act

Individuals with Disabilities Education Act

Older Americans Act

Maternal and Child Health Programs of Title V of the Social Security Act

Medicaid/Title XIX of the Social Security Act

University Center(s) for Excellence in Developmental Disabilities

Protection and Advocacy System

Local and non-governmental agencies involved with services for individuals with developmental disabilities

Non-profit groups involved with services for individuals with developmental disabilities

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Basic Responsibilities of a DD Council Member

DD Council members serve as volunteers and are appointed by the state governor to represent and advocate for people with developmental disabilities and their families.

Councils members are expected to display the following in all manner of Council business: Honesty Respect Sensitivity to and tolerance of differing views Friendliness Responsiveness A patient approach Personal integrity Concern for the Council’s development

Adapted from BoardSource Governance Series

Role and Responsibility: What is the difference? Role defines position within an organization Responsibility defines duties of the position

Prepare for and attend Council meetings and committee meetingso Staff put great effort into compiling the information you, as a Council member will

need to be fully informed and participate in meetings. It is expected you will respond to email inquiries from staff in a timely manner, review materials before meetings and be prepared to actively participate, ask questions and give input.

Determine mission (the purpose of a DD Council is mandated by the DD Act)

o Create and review a statement of mission and purpose that speaks to the DD Council’s goals and primary people served.

Select the Executive Director

o Review and update the Executive Director’s job duties and responsibilities; conduct a careful search to find the most qualified person for the position

This is a DD Act mandate. The DD Council recruits and hires the Executive Director. The Executive Director recruits, hires, all other staff.

Support and annually evaluate the Executive Director

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o DD Council members should ensure the Executive Director (ED) has the moral and professional qualities to further the goals of the organization; annually evaluate the Executive Director following applicable policies and procedures.

The DD Act requires an annual evaluation of the DD Council ED. The ways for conducting an evaluation vary from DD Council to DD Council; however, it is important that the annual evaluation for a DD Council Executive Director be conducted by the DD Council (not the DSA or other entity of the state).TIP: Ensure all DD Council members know the general process and timeline for the annual evaluation of the Executive Director. The responsible person or person(s) should inform the DD Council of the completion and results of the annual evaluation once completed.

Ensure effective planning

o DD Council members should actively participate in the overall planning process for the DD Council 5 – year state plan

This is a DD Act mandate. “The Council shall develop the State plan and submit…” Active participation means that a DD Council member will use the information gained from the Comprehensive Review and Analysis (the present status of services and supports provided for people with DD and their families in the State) and information from the public to identify the unmet needs of people with DD and their families.

TIP: The personal experiences citizen members of a DD Council brings to the Council is important because they have current knowledge and experiences about accessing the service delivery system, community services, personalized supports and other experiences connected to the disability experience. However, individual DD Council members represent all citizens with developmental disabilities in the State/Territory. In other words, the leadership and guidance provided by a DD Council member affects all citizens with developmental disabilities in the State/Territory and should not be focused on personal interests.

DD Council members can take advantage of opportunities to listen to other people in the State/Territory who live with developmental disabilities. Information gained at the local level should be shared during DD Council meetings.

Implement and monitor the DD Council 5-year State plan

o DD Council members should actively participate in the implementation of the 5-year State plan (by providing leadership for strategies, activities, and approving funding) and monitor the plan’s goals

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Each year, a DD Council must submit a report of its progress toward the goals of the 5-year state plan. This report is called the Annual Program Performance Report – or PPR. Many DD Councils include a status report on all activities of the 5-year State plan during their regular scheduled meetings. This is a great way for the Council to celebrate successes, address challenges, and provide leadership and guidance to the DD Council staff on the implementation of the 5-year State plan.

Approve and implement the budget; provide financial oversight

o DD Council members should assist in developing, approving, and implementing the annual budget

This is a DD Act mandate. Each Council shall prepare, approve, and implement an operating budget – this often includes tasks such as approving funds for grant projects/initiatives, approving funds for DD Council staff to conduct activities and/or approving new and continuation grant awards. In addition, a DD Council should provide financial oversight by monitoring the Council’s financial status on a regular basis (most Councils do this as part of their regularly scheduled meetings).

For a DD Council member to fulfill their role, and perform the responsibilities of their role, the following is common information DD Council staff provide to DD Council members:

Annual Operating budget Funds awarded for grants and/or contracts for Initiatives Summary of Federal Year of Funds Funds Available for Future Projects

Common responsibilities of DD Council staff related to budget activities include: establishing the operating budget for the DD Council, allocation of funds among strategies and initiatives; approving expenditures of funds within the budget approved by the DD Council; completing financial reports in a timely manner; and, recommending budgetary activities.

Build a competent DD Council

o Identify potential members for appointment; orient and mentor new members; periodically evaluate individual and overall DD Council membership effectiveness

A DD Council will only be as effective as its individual members. The DD Act allows for DD Councils to recommend to the Governor people to serve as members. This is not a mandate, but allowed and should work in concert with the process the DD Council follows in the State/Territory.

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Ensure legal and ethical integrity (conflict of interest, code of conduct, etc.)

o Be knowledgeable about legal and ethical requirements for public officials; follow all conflict of interest policies (and other policies, as applicable) to ensure the public trust.

Words such as diligence, commitment, and vigilance are often attached to a DD Council’s member’s role as they oversee Council business – words such as compliance, transparence and accountability are often attached to the DD Council reputation and public standing.

Compliance means that the DD Council is adhering to the regulatory (DD Act mandates) and legal conditions required for the funding and operation of a DD Council.

Transparency means being open with accurate information about funding, the use of funding, major activities, and other areas such as organizational policies and procedures, requests for information, etc.

Accountability refers to the ability to follow DD Council policies and procedures. Annually, a DD Council is required to share information with policymakers, the public, agencies, and other stakeholders about DD Council activities, accomplishments, and challenges for specific reporting periods. In addition, the DD Act mandates all Councils adopt and use a conflict of interest policy to ensure DD Council members are free from real or perceived conflict(s) of interest.

Enhance the DD Council’s public standing

o Be able to talk about the DD Council mission, accomplishments, and goals to the public and gain support from the community.

DD Council members serve as a link between the DD Council and the citizens of the State. The ability to strategically communicate a DD Council’s story and contribute to a healthy and accurate public image for the DD Council is essential. DD Council members should be able to talk about DD Council achievements (information in annual reports, press releases, web-site announcements), their state plan, and be able to deliver an interesting and compelling explanation of a DD Council’s purpose and mission.

The Council Budget

Reflects the Councils State Plan – the budget is the plan of how a Council will fund their State Plan goals and objectives. It is for a specific period of time – fiscal year, or calendar year. The

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NGCDD operates on the federal fiscal year however, we monitor funds on the state and federal fiscal year.

Definitions: Administrative costs = an expense that is incurred in directing or managing the

Council; costs related to the Council as a whole (common examples: utilities, rent, accounting)

DSA = Designated State Agency Expenditure – Items bought and paid for within the same fiscal year Liquidate = spending money that has been obligated. Obligate = a legal ‘promise’ to pay money that has been set aside for a specific

activity or purpose. Federal Fiscal Year = October 1 –September 30, Calendar Fiscal Year = January 1 – December 31 State Fiscal Year = July 1 – June 30

Each Federal Fiscal year a Council receives an allotment from the Department of Health and Human Services, Administration on Community Living. Allotments are based on: the population of the State; the extent of need for services for individuals with developmental disabilities and; the financial need of the State.

Councils are given a total of three years to expend one grant award with two years to obligate the federal funds and one additional year to liquidate federal funds.

No more than 30% of a Council’s allotment may be used for administrative costs – the 30% includes the Designated State Agency (DSA) reimbursement percentage of 5% of the annual award.

The Executive Director and/or related staff typically prepare the budget for Council approval as they are in an excellent position to ensure the Council budget meets all State requirements (and requirements of the designated State agency) and is reflective of allowable categories and meets the “terms and conditions” of the grant award (as determined by ACL and OMB).

The purpose of the Council budget report is so that members can monitor obligation and liquidation of the Council grant award(s).

Once the Council approves the annual budget, the staff is charged with implementing the budget. The purpose is not to review and approve each expenditure incurred by the Council. Staff and the Designated State Agency will ensure expenditures are in concert with the budget and meet State and Federal rules for allowable costs.

What is a Designated State Agency (DSA)?

DD Councils must have a designated State agency (DSA). The DSA can be the DD Council or another agency or office of the State. The DSA receives the federal funds and pays for all expenses of the DD Council. The Administration on Intellectual and Developmental Disabilities has stated, “There does not have to be any program relationship between the Council and its designated State agency” it is primarily a fiscal relationship.

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The Act says that DD Councils cannot have a DSA that is an agency that pays for or provides services to people with developmental disabilities unless it was the DSA before 1994.

What is the State Plan?

The State plan tells the public how services and programs for individuals with DD and their families should look five years from now. The plan provides guidance to the DD Council on how to spends their resources. Each year, DD Councils are required to review and update their plan, if necessary.

The DD Act describes Areas of Emphasis that are important to people with developmental disabilities. DD Councils can spend money and perform activities in these areas.

Areas of Emphasis

Quality Assurance (Self-Advocacy) Child-care Education and early intervention Employment Health Housing Recreation Transportation Formal and Informal Community supports

Tools (strategies) a DD Council can use to Implement State Plan

Research and data gathering.

Policy papers and reports about issues that impact people with developmental disabilities.

Education (information) to the media and public.

Advice to the Governor, legislature and agencies on policy that impacts people with developmental disabilities.

Testimony in committee about how legislation will impact people with disabilities.

Help to self advocates and families to learn about and connect with the political process.

Grants/Demonstration of approaches to services and supports.

Input from the community.

Members should only speak on behalf of the Council when authorized to do so consistent with its policies.

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Tools (strategies) a Council cannot use: Protest Politics

Lawsuits

Lobbying

Represent individual interests

Lobbying

Legal and Related References:Public Law 106-402, Developmental Disabilities Assistance and Bill of Rights Act of 2000 (42 U.S.C. 15001 et seq).

Councils, Protection and Advocacy agencies (P&As), University Centers for Excellence (UCEDs) and some Projects of National Significance (PNS) are authorized under the provisions of the Developmental Disabilities Assistance and Bill of Rights Act, (the Act), to “educate,” “advise” or “inform” Federal, State and local policymakers. Sections 125(a)(5)(J), 143(a)(2)(L), 153(a)(1), and 161(2)(D)(iii). The “policymakers” referred to in the statute include members of Congress, officials of the Federal executive branch, Governors, members of State legislatures and staff of State agencies.

Councils, P&As and UCEDs have been authorized to undertake such action in order to assist policymakers to improve the services and opportunities available to individuals with developmental disabilities and their families. In addition, State Councils and P&As have the responsibility under the Act to advocate on behalf of individuals with developmental disabilities. [See Sections 121(1) and for enactment or amendment of legislation at the State level affecting individuals with developmental disabilities. Notwithstanding the Congressional authorization of activities to “educate,” “advise” or “inform” Federal, State and local policymakers and to be “advocates,” there are prohibitions on certain considered to be lobbying which are applicable to all ADD grantees. These restrictions are:

The prohibitions applicable to nonprofit grantees in OMB Circular A-122, Attachment B, Paragraph 25a (1) and (2) on using funds to influence the outcome of a Federal, state or local election or for contributions to political parties; and

The prohibition under 45 C.F.R. Part 93 on the use of grant funds to pay any person for influencing or attempting to influence a Member of Congress, any agency official, or other category of person enumerated in the regulations concerning the “awarding of any Federal contract, the making of any Federal grant, the making of any Federal loan, the entering into of any cooperative agreement, and the extension, continuation, renewal, amendment, or modification of any Federal contract, grant, loan, or cooperative agreement” and the similar provision in OMB Circular A-87, Attachment B, Paragraph 27, which applies to State and local governments and Indian tribes (www.whitehouse.gov/omb/circulars/   ).

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There are also specific restrictions on the use of grant funds to influence the enactment of legislation and related activities that are applicable to ADD grantees, Section 503 of Pub. L. 106-554, the Consolidated Appropriations Act, 2001 Web Page:(www.access.gpo.gov   ) and OMB Circular A-122, Attachment B, Paragraph 25, which is applicable to nonprofit grantees. The provision of the 2001 appropriation statute is similar to provisions adopted in earlier years. Congress may enact similar provisions in future years.There is, however, an issue of how the restrictions imposed by the appropriation statute and OMB Circular 122, Attachment B, Paragraph 25 are to be reconciled with the responsibilities of ADD grantees to educate, inform and advise policymakers, including Federal and State legislators.

Using a nonpartisan approach, grantees would be free to advocate a particular position or viewpoint so long as there is a sufficiently full and fair exposition of the pertinent facts to enable the policymaker to form an independent opinion or conclusion. In such an analysis, a grantee would refrain from presenting unsupported opinions, distorted facts, inflammatory and disparaging terms, or conclusions based more on strong emotional feelings than on objective factual conclusions.

Grantees advising legislators and others concerning adoption of legislation should approach the task in a balanced way, discussing the advantages and disadvantages of the legislation and comparing it with other proposals that may also be under consideration. A nonpartisan approach to informing legislators does not require that grantees be neutral about outcomes for individuals with developmental disabilities. Rather, grantees would have to demonstrate an unbiased attitude when considering alternatives for meeting the needs of such persons. Grantees should emphasize their role as a source of information and advice in helping legislators and other policymakers to identify and evaluate the available alternatives for meeting the needs of individuals with developmental disabilities.

Members can speak on behalf of the Council if their message is consistent with our policy statements.

Why is the independence of the Council important?

State Councils on Developmental Disabilities are unique in the state government framework. DD Councils are afforded protection under the DD Act, and yet are often placed in unbending state structures.

There are several clauses in the DD Act that DD Councils should know about for their interactions within state structures.

The first is the “noninterference clause.” The clause says that the DSA, or any other agency or office of the State, cannot get in the way of the DD Council and the implementation of the DD Council’s 5-year State plan, employees, budgets or specific activities. In general, the DSA must provide:

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Support services (as requested and negotiated by with the DD Council) Fiscal responsibilities

o Receiveo Account foro Disbursement of fundso Proper fiscal control and fund accounting procedures

Records, access, and financial reportso Provide timely financial reports about the status of expenditures, obligations, and

liquidations of the basic grant award Non-federal share (In-kind contributions, contributions of political subdivisions and

public or private entities and other variations) Assurances (shall assist the DD Council in obtaining) Memorandum of Understanding (on request of the DD Council – used to outline roles

and responsibilities of the DSA and the DD Council)

The second is the statements about budgets. A state or territory cannot apply hiring freezes, make the DD Council reduce its staff, tell DD Councils they cannot travel, or tell a DD Council they cannot use federal funds to carry out activities under the DD Act.

A third area of independence concerns DD Council staff hiring and supervision. A DD Council is required to hire a Director of the Council, should the position become vacant, and supervise and annually evaluate the Director. The Council Director hires, supervises and annually evaluates the staff of the DD Council. Staff of the DD Council, while working for the Council, shall work solely for the DD Council – staff cannot be assigned duties by the Designated State Agency or any other agency or entity of the State. The DD Council must remain consistent with State laws and policies that govern hiring and personnel issues.

What else do I need to know about my State/Territory DD Council?

Some questions you might find helpful to ask the DD Council Chairperson, Executive Director or DD Council member might be:

How is the DD Council established in our State (for example: Executive Order, State Statute)?

What is the DD Council’s vision and/or mission statement?

Who is the DD Council’s Designated State Agency (DSA)?

Who are the representatives of our DD Network programs?

Who are the DD Council Staff and what is their job(s)?

What is the DD Council attendance policy?

Where is the DD Council meetings held?

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Where can I find DD Council meeting dates?

Who do I contact for questions and support?

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Appendices

Appendices allow a Council Member to get even more information about DD Councils if they are interested.

1. History of DD Councils 2. Meeting basics3. Resource Web Sites

1. History of DD Councils

The Developmental Disabilities Assistance and Bill of Rights Act 2000 (PL 106-402) was written to improve service systems for individuals with developmental disabilities, and other purposes.

The history of the Developmental Disabilities Act (DD Act) is outlined below. It is important to know the history of the DD Act and understand the evolution over the years.

DEVELOPMENTAL DISABILITIES ACT HISTORY

Developmental disabilities Services and Facilities Construction Act of 1970 (P.L. 91-517) – (Amended Mental Retardation Facilities and Community Health Facilities Construction Act of 1963) Added term “developmental disabilities” to expand target population beyond

individuals with mental retardation, to also include individuals with cerebral palsy, epilepsy, and certain other neurological conditions which originate prior to age 18

Required states to establish a State Planning and Advisory Council responsible to submit and annual plan

Established National Advisory Council Established university affiliated facilities program (UAF)

1975 Developmental Disabilities Assistance and Bill of Rights Act (P.L. 94-103) Added autism and dyslexia to definition Councils required to prepare plans on deinstitutionalization in their state Individualized Habilitation Plans required in grant projects DD Protection and Advocacy system created Councils appointed by Governor; no longer called “advisory” Role of Council to advocate established

1978 Developmental Disabilities Amendments (P.L. 95-602) Definition revised to functional definition; age of onset raised to 22 “Priority areas” added for services and projects Council consumer representation requirement raised to 50%

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National Advisory Council dissolved

1981 Developmental Disabilities Act Amendments (through Omnibus Reconciliation Act – P.L. 97035) Reauthorization with minimal changes

1984 Developmental Disability Act of 1984 (P.L. 98-527) “Employment-related activities” added as mandated priority Values of Independence, Productivity, and Integration expressed “People First language” used throughout the Act

1987 Developmental Disabilities Assistance and Bill of Rights Act Amendments of1987 (P.L. 100-146)

Focus on the capabilities, competencies, and preferences, as well as needs of persons with developmental disabilities.

Strengthened independence of the Council Focused Councils on “system change” efforts Required 1990 Report planning effort Supported role of Council in public policy advocacy and educating policymakers

1990 Developmental Disabilities Assistance and Bill of Rights Act Amendments of 1990 (P.L. 100-496) Further strengthened independence of Councils Revised the responsibilities of “designated state agency” Added values of inclusion and interdependence Modified definition as applied to children under age 5

1994 Developmental Disabilities Assistance and Bill of Rights Act Amendments of 1994 (P.L. 103-230)

Reorganized and simplified Act. Revised “integration and inclusion” as key principle Included emphasis on cultural diversity and culturally competent services and

supports Added new definition for Personal Attendant Services Revised language to refer to State DD Council (dropped Planning from reference) Added language that the Act does not “preclude a Council from engaging in

systemic change, capacity building, and advocacy activities for individuals other than developmental disabilities, where appropriate.”

Provided as “Projects of National Significance” a special initiative to investigate the expansion of Council activities to individuals with severe disabilities other than developmental disabilities.

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Further clarified role of Designated State Agency to provide support services “as requested by and negotiated with the Council”, and required the DSA to enter into a memorandum of understanding with the Council if requested by the Council.

1996 Developmental Disabilities Assistance and Bill of Rights Act Amendments of 1996 Extended authorization of the DD Act through 1999

2000 Developmental Disabilities Assistance and Bill of Rights Act of 2000 (P.L. 104-402) Extended and reauthorized the Act through 2007 Revised requirements for State Plans for five years Added nine “areas of emphasis” instead of “priority areas” Added definition of self-determination Clarified application of DD definition for children to age 9 Requires Councils to report on waiting lists in each state Requires Councils to support self-advocacy organizations and leadership training

opportunities Requires at least 60% of the Council to be individuals with developmental disabilities

or family members and ads a representative of the Medicaid Title V agency to the Council

Requires annual reports to include information about consumer satisfaction with Council supported activities

Other Disability Laws That Might Be Helpful To Know About

The Americans with Disabilities Act of 1990 The Telecommunications Act of 1996 The Fair Housing Act of 1989 The Air Carrier Access Act of 1986 The Voter Accessibility for the Elderly & Handicapped Act 1984 National Voter Registration Act 1993 Civil Rights of Institutionalized Persons Act 1980 Individuals with Disabilities Education Act 1975 Architectural Barriers Act 1968 Developmental Disabilities Assistance & Bill of Rights Act 1975 The Rehabilitation Act of 1973 Rosa’s Law of 2010 Patient Protection and Affordable Care Act 2010 Achieving a Better Life Experience Act of 2014 Matthew Shepard and James Byrd Jr. Hate Crimes Prevention Act 2009 21st Century Communications and Video Accessibility Act 2010

2. Meeting basics

Every member of an organization should be familiar with the following simple rules and customs:

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All members have equal rights, privileges, and obligations; rules must be administered impartially. In voting, members have the right to know at all times what motion is before the assembly and what affirmative and negative votes mean.

Basic Meeting Rules

1. All remarks are addressed to the presiding chairperson. 2. The chairperson calls the meeting to order.3. The minutes are approved.4. Committee /Chair reports - if applicable.5. Old Business (unfinished business from previous meetings.)6. New business7. Program (guest speakers, etc.,) if applicable.8. Adjournment

Things to know…

1. Addressing the Chair = Chair or Chairperson2. Quorum = applies to full DD Council and committee meetings.3. Point of Order = Can be called when there is a breach in basic meeting conduct. 4. Member rights = The minority has rights that must be protected. Members must not attack

and/or question the motives of other members.

Making a Motion (Basics)1. A Council member raises his/her hand, is recognized by the Chairperson, makes the

motion clearly and concisely. 2. The motion is seconded.3. The Chairperson restates the motion to the audience.4. The Council debates/discusses the motion.

a. No member may speak twice to the same issue until everyone who wishes to speak has spoken once.

b. All remarks must be directed to the chair. c. All remarks must be courteous, on point, unbiased and non-judgmental.d. The Chairperson should moderate discussion.

5. A motion can be amended.6. The “question” is called. This ends debate/discussion.7. The vote is taken.8. The Chairperson announces whether the motion was adopted or not; instructs the

correct council member or council staff member to take action.

Note: The above content may not be consistent with laws/policies of each state/territory requirements established by respective Open meetings laws. Please check local rules.

3. Resource Web Sites

The Department of Health and Human Services

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http://www.hhs.gov/

The Administration on Children and Familieshttps://www.acf.hhs.gov/

Administration for Community Livinghttp://www.acl.gov/

Administration on Intellectual and Developmental Disabilitieshttp://www.acl.gov/Programs/AIDD/Index.aspx

National Association of Councils on Developmental Disabilities www.nacdd.orgInformation and Technical Assistance Center for Councils on Developmental Disabilities http://www.itacchelp.org National Disability Rights Networkhttp://www.ndrn.org/index.php

Association of University Centers on Disabilityhttp://www.aucd.org/template/index.cfm

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