to

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Welcome

• to
• The Louisiana Developmental Disabilities Council

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The Louisiana Developmental Disabilities Council

• The D. D. Council
• The
• Developmental Disabilities
• Council
• The Council
• What are We?

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Created by CongressD. D. Council in Every State

• 28 Members in La. Appointed by the
• Governor for a 4 Year Term
• 10 Parents
• 7 Self-Advocates
• Advocacy Center
• Human Development Center
• Non-Profit Agency
• 8 State Agency Reps

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Executive Director Staff work for the
CouncilCouncil funding comes from the federal
government.LA receives 1.4 M/yearThe
Council has quarterly meetingsWe develop a Five
Year Plan which dictates our activities and how
we spend Council funds.
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• Louisiana Developmental
• Disabilities Council
• Mission Statement
• To ensure all individuals with disabilities
  benefit from supports and opportunities in their
  communities so they achieve quality of life in
  conformance with their wishes
• Adopted 10-11-01

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Developmental DisabilitiesAssistance and Bill of
RightsAct of 2000PL 106-402October 30, 2000
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• Purpose of the Act
• To assure that individuals with developmental
  disabilities and their families participate in
  the design of and have access to needed community
  services, individualized supports, and other
  forms of assistance that promote
  self-determination, independence, productivity,
  and integration and inclusion in all facets of
  community life, through culturally competent
  programs.

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• What are these culturally competent programs?
  Theyre us!
• The DD Act created, authorizes, and provides
  funding to three DD agencies in each State.
• D. D. Councils
• Protection and Advocacy Systems
• The Advocacy Center
• University Centers for Excellence (in
  Developmental Disabilities Education, Research,
  and Service)
• The Human Development Center

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• Protection and advocacy systems
• in each State are to protect the
• legal and human rights of
• individuals with developmental
• disabilities.

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University Centers for Excellence

• to provide interdisciplinary pre-service
  preparation and continuing education to
  strengthen and increase the capacity of States to
  achieve the purpose of this Act
• to provide community services that provide
  training and technical assistance that provide
  demonstration and model activities
• to conduct research, evaluation and analysis of
  public policy
• to disseminate information

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Values in the Act

• Individuals with developmental disabilities,
  including those with the most severe
  developmental disabilities, are capable of
  self-determination, independence, productivity,
  and integration and inclusion in all facets of
  community life, but often require the provision
  of community services, individualized supports,
  and other forms of assistance

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• Individuals with developmental disabilities and
  their families have competencies, capabilities,
  and personal goals that should be recognized,
  supported, and encouraged, and any assistance to
  such individuals should be provided in an
  individualized manner, consistent with the unique
  strengths, resources, priorities, concerns,
  abilities, and capabilities of such individuals

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• Individuals with developmental disabilities and
  their families are the primary decision makers
  regarding the services and supports they receive,
  including where they choose to live from
  available options, and play decision making roles
  in policies and programs that affect their lives.

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• Services, supports, and other assistance should
  be provided in a manner that demonstrates respect
  for individual dignity, personal preferences, and
  cultural differences
• Communities are enriched by the full and active
  participation and contributions of individuals
  with developmental disabilities and their
  families

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• Specific efforts must be made to ensure that
  individuals with developmental disabilities from
  racial and ethnic minority backgrounds and their
  families enjoy increased and meaningful
  opportunities to access and use community
  services, individualized supports, and other
  forms of assistance available to other
  individuals with developmental disabilities and
  their families.

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Some of the Findings in the Act

• 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 over their
  own lives, and to fully participate in and
  contribute to their own communities through full
  integration and inclusion in the economic,
  political, social, cultural, and educational
  mainstream of United States society

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• In 1999, there were between 3.2 and 4.5 Million
  individuals with developmental disabilities in
  the U.S., comprising between 1.2 and 1.65 percent
  of the U.S. population
• Individuals whose disabilities occur during their
  developmental period frequently have severe
  disabilities that are likely to continue
  indefinitely

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• Individuals with developmental disabilities often
  encounter discrimination in the provision of
  critical services
• and are at greater risk than the general
  population of abuse, neglect, financial and
  sexual exploitation, and the violation of their
  legal and human rights

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• Individuals with developmental disabilities often
  require lifelong community services,
  individualized supports, and other forms of
  assistance and a substantial portion of these
  individuals and their families do not have access
  to appropriate support and services and remain
  unserved or underserved
• In almost every State, individuals with
  developmental disabilities are waiting for
  appropriate services in their communities

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• There is a need to ensure that services and
  supports are provided in a culturally competent
  manner that ensures that individuals from racial
  and ethnic minority backgrounds are fully
  included in all activities provided under this
  Act
• There needs to be greater effort to recruit
  individuals from minority backgrounds into
  professions serving individuals with
  developmental disabilities and their families

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• Current research indicates that 88 of
  individuals with developmental disabilities live
  with their families or in their own households
• Many service delivery systems and communities are
  not prepared to meet the impending needs of the
  almost 500,000 adults with developmental
  disabilities who are living at home with parents
  who are 60 years old or older and who serve as
  the primary caregivers of the adults.

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The DD Council Mandate

• Advocacy
• Capacity Building
• Systemic Change

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Result in

• Individuals with developmental disabilities and
  their families participating in the design of and
  having access to needed community services,
  individualized supports, and other forms of
  assistance that promote self-determination,
  independence, productivity, and integration and
  inclusion in all facets of community life.

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• State Councils on Developmental Disabilities are
  charged to undertake advocacy, capacity building,
  and systemic change activities 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
  their families.

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LouisianaHistory
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1988

• Institutional System
• Residential or Facility Based Services

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1988 DD Council Conference

• Introduced Family Support and Supported Living to
  Louisiana

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• LaCAN was created to pass Act 378 and
• the Community and Family Support Movement was
  born.
• Now that we have all of this paper full of good
  ideas on the wallswhat are we going to do about
  it?
• Mike Vasko, Shreveport Parent

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• Act 378 of 1989
• Calls for the development of a plan for a
  system of community and family supports and
  implementation of the plan by the La. Dept. of
  Health and Hospitals.
• Specifies that services to persons with
  developmental disabilities should be responsive
  to the needs of individuals and their families,
  rather than fitting people into existing
  programs.
• Directs the DD Council to develop the plan
  based on two guiding principles and lists an
  array of community and family supports to be made
  available to families and adults.
• Includes time frames for the development and
  implementation of the plan.

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GUIDING PRINCIPLES

• Children, regardless of the severity of their
  disability, need families and enduring
  relationships with adults in a nurturing home
  environment. As with all children, children with
  developmental disabilities need families and
  family relationships to develop to their fullest
  potential.

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GUIDING PRINCIPLES Contd.

• Adults with developmental disabilities should be
  afforded the opportunity to make decisions for
  themselves and to live in typical homes and
  communities where they can exercise their full
  rights and responsibilities as citizens.

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Office for Citizens with Developmental
Disabilities (OCDD)

• ACT 378 Services
• Cash Subsidy 258 per month
• Children with the most severe disabilities
• Individual/Family Support
• Purchase of goods and services, based on need
• Information and Support
• Families Helping Families

• Other Major Services
• Vocational/Employment Services
• Early Intervention
• Assertive Community Treatment Teams
• State Developmental Centers

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Office of Mental Health (OMH)

• Act 378 Services
• Cash Subsidy 258 per month
• Children with serious emotional disturbance
• Family Support Services
• Purchase of goods and services,based on need
• Supported Living Services

• Other Major Services
• Psychiatric Rehab. Services (Medicaid)
• Community Mental Health Centers
• Housing Resources
• Crisis Management Services
• Day programs and Psychosocial Rehab. Programs
• Hospital Based Services
• Case Management
• Assertive Community Treatment Teams

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Louisiana Rehabilitation Services (LRS)

• Act 378 Services
• Supported Living Services

• Other Major Services
• Employment and Training Services
• Independent Living Services
• Traumatic Head Spinal Cord Injury Services
• Blind Services

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Bureau of Community Supports Services (BCSS)

• Act 378 Services
• NOW Waiver-(Formerly the MR/DD Home and Community
  Based Waiver)

• Other Major Services
• Childrens Choice Waiver
• PCA Waiver
• Elderly and Disabled Adult Waiver
• Adult Day Health Care Waiver

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Bureau of Health Services Financing (Medicaid)

• Early, periodic screening, diagnosis and
  treatment (EPSDT) - Preventative and all
  medically necessary services for Medicaid
  eligible children under age 21 including dental,
  extended home health, personal care services, and
  eyeglasses.
• LaCHIP
• ICFs/MR
• Nursing Homes

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Childrens Special Health Services (CSHS)

• Specialized Clinic Services
• Early Steps
• (Part C)

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La. Developmental Disabilities Council

• Act 378
• Information Support
• Families Helping Families
• Federation of Families for Childrens Mental
  Health
• Supported Living Services
• Adults with Physical Disabilities

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LaCANLouisiana Citizens for Action Now!

• Grassroots Advocacy Network
• 10 Regional Teams
• Advocates for Community and Family Supports

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LaCANs Accomplishments Act 378
Passed Community Family Support System Plan
Approved, Funded Implemented 15 Million
in State Funds 160 Million in Federal Funds
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1844 Children receiving Cash Subsidy 1636
receiving Individual/Family Support 700
Families receiving Consumer Care Resources 4576
Funded New Opportunities Waiver Slots 30 Adults
in Supported Living thru OMH 46 Adults in
Supported Living thru LRS DDC Families Helping
Families Funded Federation of Families Funded
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Act 1147 Passed in 2001 Waiver Rewrite
Submitted Funded As the New Opportunities
Waiver (NOW) in 2003
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Act 1147 of 2001

• Amended Act 378
• Reinforced Guiding Principles in Act 378
• Expanded populations served to include persons of
  all ages with disabilities

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..Act 1147

• Called for the formation of Disability
  Services and Supports System Planning Group
  (DSSS) and a Consumer Task Force (CTF) to develop
  a proposal to reform the long term support
  system. This proposal shall be submitted to DHH
  and to the Senate and House Committees on Health
  and Welfare.

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Act 1147

• Called for DHH and the Governors Office on
  Disability Affairs to apply for a Real Choice
  Systems Change grant that funds state systems
  change to promote the design and delivery of home
  and community-based services that support
  individuals with a disability or chronic illness
  to live and participate in their communities.

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Louisiana is Slow to Change

• La. serves twice as many people in developmental
  centers as the national average
• 9 states and the District of Columbia have closed
  ALL of their developmental centers
• 12 states have reduced the number of
  developmental centers by 50 or more

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• La. is one of only 13 states that have not closed
  any of their developmental centers. Of those
  states, 5 have only 1 developmental center, and 3
  have only 2. Of the states not closing
  developmental centers, La. has the largest number
  remaining open NINE.

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Last year

• The state spent almost 185 million on
  developmental centers serving 1600 people
• 184 million was spent on private ICFs/MR serving
  4100 people
• Only 165 million was spent on the MR/DD waiver
  serving 4300 people

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Those who wait

• Over 7500 on the waiting list for the New
  Opportunities Waiver
• Almost 900 of those are residents of private
  ICFs/MR
• Paying for our current institutional system is
  preventing us from affording the waiver services
  the vast majority of people want

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System Imbalance

• Louisianas over-utilization of institutional
  services is inefficient and ineffective. To
  better meet the needs of ALL those needing
  supports, the state must spend resources more
  effectively and efficiently.
• Our state must properly align itself to match
  resources with demand.

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Councils 2004 Legislative Agenda

• Educational Campaign on Rebalancing the Long Term
  Support System
• Legislation to Enact a Money Follows the
  Individual Program
• Legislation to Increase Wages and Status of
  Direct Support Professionals
• Increase in NOW Waiver Slots (700)

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• Protect Funding for Families Helping Families -
  500,000 in state general funds
• 4.1 Million in state funds for LRS to draw down
  an additional 10.9 Million in federal funds for
  supported employment. 181,763 in state funds to
  draw down an additional 489,823 in federal funds
  for transition.

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Council Member inAction
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CouncilsCharge
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• To Organize and Enlist
• Others to Influence
• To Empower
• To Change Public
• Attitudes
• To Advocate and Influence

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• To Demonstrate
• Innovation
• To Provide Training and
• Technical Assistance
• To Redesign the System
• To Remove Barriers

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• To Educate Policy Makers
• To Educate the Public
• To Develop Support
• Coalitions
• To Outreach

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Five Year Plan

• Developed by the Council in April
• Dictates how the Council will spend its funds and
  what activities the Council will engage in over
  the next five years
• Submitted to and approved by feds
• Amended every year
• Annual report submitted to federal govt

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Areas of Emphasis

• Quality Assurance
• Education and early intervention
• Child care
• Health
• Employment
• Housing
• Transportation
• Recreation
• And other services available or offered to
  individuals in a community, including formal and
  informal community supports that affect their
  quality of life

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Areas of Emphasis

• Quality Assurance
• People have the information, skills,
  opportunities, and support to live free of abuse,
  neglect, financial and sexual exploitation, and
  violation of their human and legal rights.
  Quality assurance systems contribute to and
  protect self-determination, independence,
  productivity, and integration and inclusion in
  all facets of community life.

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• Education and early intervention
• Students reach their educational potential and
  infants and young children reach their
  developmental potential.
• Child care
• Children and Families benefit from a range of
  inclusive, flexible child care options.
• Health
• People are healthy and benefit from the full
  range of needed health services.
• Employment
• People get and keep employment consistent with
  their interest, abilities and needs.

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• Housing
• Adults choose where and with whom they live.
• Transportation
• People have transportation services for work,
  school, medical, and personal needs.
• Recreation
• People benefit from inclusive recreational,
  leisure and social activities consistent with
  their interests and abilities.

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• And other services available or offered to
  individuals in a community, including formal and
  informal community supports that affect their
  quality of life

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Self Determination/CommunityInclusion/Housing
Committee

• Quality Assurance
• Community Supports
• Housing

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Health/Education/EmploymentCommittee

• Education Early Intervention
• Employment
• Health
• Child Care
• Transportation
• Recreation

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Executive Committee

• Ad Hoc Committees
• Bylaws
• Membership
• Nominating
• Others as needed

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Major Council Initiatives

• Inclusive Education Project
• 100,000 to provide training to policymakers and
  stakeholders in a local school district to
  increase inclusion of students with disabilities
  into the general education environment

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• Sheltered Workshop Conversion Project
• 40,000 to convert an existing sheltered
  workshop into a community based organization
  providing opportunities for participants to
  engage in and learn about community activities
  not related to paid work, or to engage in paid
  competitive employment.

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• Partnership for Excellence Provider Training
  Project
• 90,000 to provide training and support to
  supported living provider agencies to increase
  best practices and person centered services for
  individuals with disabilities. The training is
  provided to administrators, managers and direct
  support professionals.

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• Partners in Policymaking Leadership Training
  Program
• 88,000 to provide intensive training, one
  weekend a month for eight months to individuals
  with disabilities or family members of
  individuals with disabilities on skills necessary
  to successfully advocate for services and
  supports for people with disabilities as
  community leaders and policy makers on
  committees, boards or commissions at the local,
  state and national levels.

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• Statewide Self Advocacy Organization
• 96,500 to provide for the establishment and
  operation of a statewide self-advocacy
  organization made up of and led by self-advocates
  and to provide for ongoing leadership and skills
  development training sessions for self-advocates
  and advisors.

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• Inclusive Recreation Awareness Training Project
• 15,000 to provide for an awareness training
  program for recreation departments to increase
  the inclusion of people with disabilities in
  recreation activities or opportunities.

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• Louisiana Citizens for Action Now (LaCAN)
• 40,000 to provide for support to the Councils
  grassroots advocacy network

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• Families Helping Families
• 667,774 (500,000 in State General Funds) for
  the administration, operation and coordination of
  nine family-directed, family resource centers to
  provide information and referral, peer to peer
  support and education and training to individuals
  with disabilities, and families of individuals
  with disabilities.

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• Funding also provides support and training to
  families to access their rights to
  rehabilitation, planning and transition services
  and support for individuals with developmental
  disabilities and family members to attend
  conferences and other training events.

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Council Responsibilities
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Advisor to

• The Governor and administration
• The Legislature
• U. S. Congress

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Negotiator with

• State agencies
• Private providers
• Other advocacy groups

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Capacity Builder

• Service system
• Individuals with disabilities and their families
• Communities

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Council Member Responsibilities

• Attend quarterly council meetings held in
  January, April, July, and October of each year.
• Prepare for Council and Committee meetings by
  reading the agendas and supporting material.

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• Vote on matters during the council meetings.
• Advocate for the Councils mission and
  philosophy-independence, productivity,
  integration and inclusion of persons with
  developmental disabilities in the community.

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• Be accessible to legislators and policymakers for
  information on issues affecting the lives of
  persons with developmental disabilities.
• Represent the Developmental Disabilities Council
  at events, forums, meetings, etc. in their
  respective communities.

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• Represent their respective communities at the
  meetings of the Council.
• Participate on a standing Council Committee.

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• Serve on various Council Ad Hoc Committees and
  other statewide groups.
• Participate in the development of the Councils
  Five Year Plan and annual amendments.

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• Participate in orientation and training sessions
  held in addition to regularly scheduled Council
  meetings.
• Participate in the development of Council
  positions on matters of public policy.

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• Read and respond to action alerts.
• Consult with Council staff as needed.
• Share information between Council and other
  organizations, as appropriate.

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LEADERS

• Understand, welcome
• Are
• Inherit leave a
• Maintain

• Diversity
• Servants
• Legacy
• Momentum

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• DO
• Express
• Enable
• Tolerate

• The Right Thing
• Values thru Behavior
• Strength in Others
• Ambiguity

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• Have

• Vision
• Passion
• Integrity
• Curiosity
• Daring

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You gain strength, courage, and confidence by
every experience in which you really stop to
look fear in the faceYou must do the thing you
think you cannot do. - Eleanor Roosevelt,
First Lady (1884-1962)
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WalterFish