MARYLAND DEVELOPMENTAL DISABILITIES COUNCIL

NUMBER of PEOPLE with DEVELOPMENTAL DISABILITIES in MARYLAND:

No reliable data exists on the prevalence of developmental disabilities in Maryland.
According to the U.S. Census Bureau the most recent estimate of the population in the state is 5,296,486. Based on that population projection, it can be estimated that approximately 95,337 people in Maryland have a developmental disability.

NUMBER of COUNCIL MEMBERS

 
30 Council members
8 people with disabilities (at least 2 vacant positions)
10 family members
3 local agencies

And representatives from the following state agencies:
Division of Special Education, Maryland State Department of Education
Developmental Disabilities Administration, Department of Health and Mental Hygiene
Maryland Department of Disabilities
Division of Rehabilitation Services, Maryland State Department of Education
Office for Genetics and Children with Special Health Care Needs, Department of Health and Mental Hygiene
Kennedy Krieger Institute
The Arc of Northern Chesapeake Region
Office of Health Services, Department of Health and Mental Hygiene
Maryland Department of Aging
Maryland Disability Law Center
Jubilee Association of Maryland
Social Services Administration, Department of Human Resources

NUMBER of STAFF: 5 full-time, 3 part-time

STANDING COMMITTEES

Executive Committee
Consists of the chairperson, vice-chairpersons, chairpersons of all standing committees, and three additional Council members. At least two members shall be consumers. The past chairperson shall remain on the Executive Committee fro a period of one year.

Children and Family Issues Committee.
The Children and Family Life Committee focuses on critical public policy, advocacy, capacity building and systemic change activities that affect the lives of children with developmental disabilities and their families. Areas of emphasis include, but are not limited to: childcare, early intervention, education, and formal and informal supports for children and families.

Adult Issues Committee.
The Adult Life Committee focuses on critical public policy, advocacy, capacity building and systemic change activities that affect the lives of adults with developmental disabilities and impact other community issues. Areas of emphasis include, but are not limited to: employment, housing, transportation, recreation, and formal and informal supports for adults.

Cross-Cutting Issues Committee.
The Cross-Cutting Issues Committee focuses on critical public policy, advocacy, capacity building and systemic change that affect cross-cutting issues activities. Areas of emphasis include, but are not limited to: self-advocacy, self-determination, quality assurance, and health care.

FREQUENCY of MEETINGS: Quarterly with an annual one-day retreat

DESIGNATED STATE AGENCY/ADMINISTRATIVE AGENCY:
The Maryland Department of Disabilities

2005 FEDERAL ALLOTMENT: $1,018,272

return to index

CURRENT COUNCIL PROJECTS

• Employment

  • Project Income
    
• Education & Early Intervention
• Coalition for Inclusive Education Opportunities
• HIP After School Program
  
• Housing
  • Home-Access Project
    
• Quality Assurance
  • My Life Going FAR
  • Partners in Policymaking
  • Take Charge Life Leadership
  • Leaders in Disability Policy
  • Cross Disability Rights Coalition
    
•  Formal & Informal Community Supports
  • Immigrant to Professional: A New Approach
    
    

return to index

Representative results of past or ongoing projects

• Project Income has found employment for approximately 20 people with developmental disabilities and trained more than 250 people in employment.

• The Home Access Project has had approximately 100 people who graduated from its Leadership Academy and were active in systems advocacy about housing. As a result of the project more than 400 people were trained in housing.

• Because of the work of the Maryland Coalition for Inclusive Education an average of 150 students receive the support they need to reach their educational goals and more than 900 schools have improved their IEP practices.

• The Special Education Leadership Project worked to impact the services and supports received by more than 2,500 students in Maryland. Approximately 120 entities participated in partnerships or coalitions created or sustained as a result of the project.

• A.T:L.A.S.T. improved more than 160 education programs/policies.

• Partners Plus trained about 64 people a year in child care and supported more than 200 people to be active in advocacy efforts around childcare.

• Melwood trained approximately 70 people in recreation.

• Council projects in the area of transportation helped more than 1,500 people to have transportation services that meet their needs.

• The Cross Disability Rights Coalition got more than 35 people with developmental disabilities involved in systems advocacy about quality assurance in community placements.

• The Parent to Parent project provided almost 400 parents with formal/informal community supports.

• The number of hits on the Council’s Family NETWorks website reached an all time high of 98,700 hits in one month. Our publications reach thousands of people and promote the work and the mission of the Maryland Developmental Disabilities Council.

return to index

• EXAMPLES OF SIGNIFICANT LONG TERM ACHIEVEMENTS

thirty years of projects

The Council’s past initiatives, accomplishments, and partnerships are the foundation on which we will build a future where not one person is living in an institution, where all children are included and supported in their neighborhood schools and all people with developmental disabilities and their families lead lives o f their choosing, with the support they need and want.

Our Achievements
1971-2001

The past three decades have brought extraordinary changes in the lives of people with developmental disabilities and in the systems that provide them support. However, these changes have not come easily. In many ways people with disabilities and their families have witnessed significant improvements, but much work remains. Determined advocacy, collaborative efforts and strong leadership have brought about more choices and opportunities and greater empowerment. And these changes are just the beginning.
The Council is celebrating achievements of the last 30 years that have been realized through an unwavering commitment to inclusion and through many partnerships. The following pages highlight some of the Council’s work and initiatives that have had the greatest impact over the past three decades and hold promise for the future.
Supporting Families

Thirty years ago, families had few ways to get resources and support concerning a child’s developmental disability. Many families were simply told by health professionals and others to expect little of their child and that their best option was to admit their child to an institution or other out-of-home placement. Knowing that many families want and need support to raise their children at home, the Council undertook a successful long-term commitment to building, improving and expanding family supports and services in Maryland. This has entailed a multi-pronged approach with many strategies.

return to index

Demonstrating Best Practices
In the 1980s, no part of the state’s developmental disabilities budget was allocated to help families raising their children with developmental disabilities at home. Families were mostly on their own. This changed in 1983 when the Council funded the start-up of Family Support Services (FSS) through a three-year demonstration grant. Family Support Services work with each family to identify and acquire services and resources that will best meet their needs. Services are individualized, flexible and family-centered.

Legislative Advocacy
Having demonstrated the value and effectiveness of FSS, the Council — in collaboration with families and other organizations — advocated with the state legislature and other policy makers to commit state funds to support families raising children with developmental disabilities. The effort paid off: in 1986 the Maryland General Assembly passed legislation to establish and fund an ongoing Family Support Services program within the Developmental Disabilities Administration.

Improved Practices
After the state funded program had been in operation for about a decade, the Council conducted a comprehensive study in 1997 to evaluate how well Family Support Services were assisting parents and reaching underserved families. A Council task force made up of an array of stakeholders, including parents, guided this effort. The study resulted in a set of recommendations that were adopted by the state, resulting in program improvements. The Council has also invest-ed in testing out other promising family support ideas through numerous innovative grants. These include demonstrating a Cash Assistance Program, developing a Parent-to-Parent support network and increasing respite options through Partners Plus.

Increased Funding
The Council’s FSS study concluded that funding for support to families was severely inadequate. A range of Council efforts including mobilizing families to tell their stories, educating legislators and policymakers, and partnerships with other leading advocacy and state organizations, played a significant role in increasing Family Support Services funding sevenfold over five years — enabling many more families to raise their children with developmental disabilities at home. In 2002, DDA invested over $7M in FSS.

return to index

Reaching Unserved and Underserved Families
In 2000, the Council launched a project called Family NET Works. The project focuses on: improving and increasing family-directed supports and services available throughout Maryland; increasing families’ knowledge and understanding of a wide range of supports, and reaching families that have been traditionally underserved. The needs of families from rural areas, concentrations of poverty and various cultures are being addressed through unique out-reach, training and networking. These communities are now more informed, empowered and able to access needed family supports.

Inclusive education
Three decades ago, many children with disabilities were completely excluded from public schools. In 1974, Maryland became one of the first states mandated by law to provide educational services for children with disabilities. One year later, the passage of the Education for All Handicapped Children Act by Congress opened school doors to all children and provided federal funding to support the education of children with disabilities.

Access to education, however, has not meant equity, equality or inclusion. Recognizing that many children with disabilities are segregated from their peers, the Council has actively worked with a diverse coalition to improve special education services and to promote opportunities for students with disabilities to be educated in the same schools as their peers without disabilities. The coalition works through legislative activities, information dissemination, public policy improvement, and advocacy with education leaders. A great deal of work remains as Maryland ranks far below other states in fully including students with disabilities in regular classrooms.

return to index

Supporting Parents
In keeping with a strong belief in empowering parents, the Council sponsored the establishment of The Parents’ Place of Maryland in 1990. The Parents’ Place is a parent-governed organization that supports and empowers parents through training, information and educational advocacy throughout the state.

In 2001, the Council launched the Special Education Leadership Project. The project supports and empowers parents to develop partnerships and impact systemic education issues through local Special Education Citizen Advisory Committees. Parents and students are mobilized to maximize their participation in, and influence over, the design, funding, implementation, and evaluation of local special education services.

Inclusive Education
The Council funded the establishment of, and has provided long-term support to, the Maryland Coalition for Inclusive Education. MCIE was established to help increase inclusive policies and practices in Maryland’s schools for children with severe disabilities. MCIE provides training and legal representation for families and empowers parents to advocate for the least restrictive educational setting for their children. Over 4,000 families have been served.

Supporting Students and Teachers
The Council has sponsored several projects to pro-vide resources to students, parents and schools. The Tech for Tots project provided students with disabilities the opportunity to try out computer hardware and software and choose the technology that works best in their educational program. The ATLAS project expanded access to assistive technology services by evaluating student needs, establishing a lending library of A.T. resources, and providing training and support to students, their families and school personnel in the use of the technology. The Connections project expanded and refined a co-teaching model in general education classrooms by adapting curriculum and extracurricular activities using assistive technology.

Supporting Child Care and Pre-School Inclusion
In partnership with the MD State Department of Education, the Council has sponsored projects that provided resources, training and technical assistance to parents, preschools, child care centers, and family day care providers — critical to successfully including children with developmental disabilities. Other organizations have expanded on these activities throughout the state. The Council continues to impact childcare policy, training and education in collaboration with the Child Care Administration, parents and other stakeholders.

return to index

Meaningful work
Opportunities for work were virtually non-existent in 1971 for individuals with developmental disabilities. Other people’s expectations, outright discrimination and limited training, support and transportation kept many people with disabilities out of the workforce. By 1985, Maryland had an extensive network of activity centers and sheltered workshops. Supported employment services, which assist people to get and keep typical jobs, were available on a small scale — but many more people wanted jobs with this type of sup-port in the community.

The DD Council recognized the need to expand supported employment services throughout the state, remove barriers, and develop more opportunities for meaningful work in the community. To achieve this goal, the Council used a variety of approaches including: designing and funding demonstration projects; providing leadership to bring best and promising practices to Maryland; and advocating for increased state funding.

Maryland Supported Employment Project
The Council partnered with Kennedy Krieger Institute, private business, state agencies, and other advocates in 1985 to implement the Maryland Supported Employment Project. Through Council support, this project developed a comprehensive system of supported employment that had: incentives for converting existing programs to supported employment; an increased capacity to serve people; and an emphasis on making a successful transition from school to work.

Supported employment was expanded statewide to serve 1300 people with develop-mental disabilities. The capacity of the system expanded so that over 95% of service providers began offering supported employment as an option for people with develop-mental disabilities and state funded vocational services became focused on supported employment.

return to index

Business Sponsored Supported Employment
Supports for employees with disabilities are typically provided by an outside agency. In 1988, the Business Sponsored Supported Employment project demonstrated that given initial assistance and philosophical commitment, a business would provide supported employment services through its own internal expertise. With funding from the Council, the project provided training to hotel managers, supervisors and co-workers to support individuals with developmental disabilities to be successful in the workplace.

Sheltered Workshop Conversion
Realizing that systemic change requires a variety of approaches, the Council funded several projects in the late 1990’s to convert segregated vocational and day programs to employment services that are more responsive to individual preferences and abilities.
The PDQ Project provided supported employment and integrated community opportunities to individuals who had been served in a sheltered workshop, thereby closing the workshop. This project focused on developing supports for individuals with the most extensive support needs. The Career Development Project restructured an entire agency’s vocational and day habilitation services to increase community-based employment, paid apprenticeships and volunteer opportunities with local businesses.

Information and Training
Many people with disabilities do not work because they fear losing their health care and other public benefits. In response, the Council launched the Benefits Resource Network in 1989 and the Benefits INfoSource in 1999 to provide information, advocacy and direct assistance to people with disabilities so that they under-stand Social Security benefits and effectively use work incentive programs. These projects assisted over 3500 people and laid the foundation for services to be provided to many more people through funding from the Social Security Administration.

return to index

Community for All
Reliance on institutions reached its peak in the 1960s, segregating people from their families and communities. A shift occurred over the next three decades as Maryland began building educational and community service systems for children and adults with developmental disabilities. Over three thousand people with developmental disabilities once lived in Maryland state institutions. In 2001, approximately 500 people still did. This is 500 too many.

The service system has begun to support people in ways that not only assure their safety and well being, but also assist them to experience and engage in all that the community has to offer. For over 30 years, the Council has taken an active lead in promoting the full inclusion of people with developmental disabilities in all aspects of life. Services and supports must continue to evolve in order to ensure that people with developmental disabilities have opportunities to live their lives the way they choose, involved and connected with their families and communities. Without this, segregation and isolation continue.

In 1988, the Citizenship Project was at the forefront of supported living services in Maryland by providing individualized supports rather than pre-packaged services. This Council-sponsored project demonstrated the impact of empowering individuals with the freedom of choice, building community and forming relationships.

Several demonstration projects in the early 1990s, including the Consumer Empowerment Project, continued work toward a more customer-driven service system. These projects encouraged consumer choice and natural supports from the community, and developed individualized supports.

The Council has also undertaken award-winning activities to increase public awareness and support of critical disability issues. Highlights include a radio public service announcement called Slice of Life; Open Minds/Open Doors posters; and Visions of Equality and About Families publications.

Research
In 1990, a Council commissioned study illustrated the state’s bias toward funding institutional services while thousands of people waited for community services. The study clearly supported the argument for increased funding for community services and illustrated eventual cost savings through the closure of institutions.

return to index

Expanded Community Resources
Leading the Home of Your Own Coalition, the Council worked with the Department of Housing and Community Development to develop a mortgage product for people with disabilities and low incomes who otherwise could not afford to own a home — a unique program in the nation. To date, nearly $16M has been committed.

The Council took a lead role in advocating for protections for children and adults with disabilities as the state implemented its managed care system for Medicaid recipients.
Continuing advocacy focuses on program implementation and policy development that addresses critical disability healthcare issues.

The Wicomico Transit project has expanded transportation regionally, significantly increasing hours of operation, geographic reach, and the number of people with disabilities with access to work, friends and family, healthcare, and community activities.

Civil Rights
In 1999, advocacy led by the Council and 14 cross-disability collaborators resulted in Maryland reversing its decision to join other states in arguing for limited rights for people with disabilities in the U.S. Supreme Court Olmstead case. Many other states followed Maryland’s lead, and refused to support the argument that community options should be limited.

Influential Voice
The decade of the seventies saw much social upheaval and advancement in civil rights for women and minorities, while the movement for people with disabilities was in many ways just beginning. This movement became more pronounced in the eighties, culminating in the pas-sage of the Americans with Disabilities Act in 1990. That same year, the reauthorized Developmental Disabilities Act highlighted a movement toward full inclusion of people with disabilities into the broad spectrum of life. Only through the active involvement of people with developmental disabilities and their families have we seen significant changes in attitudes, laws, programs, and services in all areas of life.
The Council has supported people with disabilities and their families in many ways to become empowered, to speak for themselves, and to be at the center of decisions affecting their lives — both personally and at a systems level.

return to index

Leadership Development
One of the Council’s long-term commitments has been to Partners in Policymaking. Partners builds skilled advocates and leaders through an extensive training program for adults with developmental disabilities and parents of children with disabilities. The project is a partnership between the Council, The Arc of MD and the State Department of Education.

Established in 1988 and still active today, the Montgomery Exceptional Leaders project promotes awareness, builds acceptance and empowers students with disabilities to become school and community leaders. The Council has also supported the Youth Leadership Forum, a program for high school students with disabilities emphasizing leadership skills, independence, and career goal setting. Support of Self-Advocacy Groups People On the Go’s Leadership Now project sup-ported local self-advocacy groups to organize, build, strengthen and sustain their groups and to influence issues important to them.

Support of Advocacy Initiatives
The Baltimore Advocacy Group trained agency staff about the rights of individuals with disabilities and how people with disabilities want to be treated, including making their own choices. The Campaign for Freedom is a statewide movement to close institutions and support people in the community. Self-advocates are actively involved in legislative advocacy, public awareness, and direct action to accomplish this goal.

Legislative Advocacy
In 2000, the Council established its Legislative Advocacy Support Fund to cover the cost of transportation, personal assistance services and other costs incurred by individuals with disabilities and parents when they participate in the legislative process.

Small Grants
Through small grants, the Council has supported the participation of many people with disabilities and parents at conferences in Maryland and throughout the country where they become informed, network, and impact disability issues.

Self-Determination
The Council sponsored an evaluation of Maryland’s Self-Determination Initiative and a consumer satisfaction survey of individuals who participated in it. The studies noted successes, remaining challenges and made recommendations to expand self-determination practices statewide.

 

For more information, please click on this link for the Council’s 2004 Annual Report: http://www.md-council.org/Publications/Annual_Report/annual_report.html

return to index