Policy & Legislation

History of Activism: Shaping Public Policy

When Shawn Lapin was diagnosed with autism in 1970, children with autism were not entitled to an education.  In 1972, the Lapins filed Shawn Lapin vs. State of California to mandate education for children with autism.  In that same year, the Lapins worked with Senator Alan Cranston to include autism in the Developmental Disability Act. At that time autism was designated as a mental illness.  They also helped write the consumer portion of the first publicly funded school program in the country, which was funded through a Federal Grant.  Harvey was put in charge of PR for the National Society for Autistic Children (NSAC) and Connie was appointed to the Western Center for Law & the Handicapped and Children’s Hospital/Regional Center for developmental disabilities of southern California as the first autism representative in the state

In the early –mid 1970s, the Lapins continued their public policy efforts.  They worked with Dr. Edward Ritvo of UCLA on a conference that resulted in the publication of a book on autism this included a chapter on Family Needs written by the Lapins.  In 1973, Harvey Lapin was put in charge of National Autistic Children’s Week and Shawn was the first Poster Child for NSAC.  Harvey was responsible for lining up celebrity support for autism, including Joanne Woodward & Paul Newman, Jean Peters, Johnny Cash, Joe Campanella (Spokesperson) and Lloyd Nolan (Honorary Chair).  In 1974 Harvey collaborated with Mike Gavin of NBC on a project entitled “Minority of One.”

The Creation of Jay Nolan Community Services

By the mid-1970s, the Lapins and other parents they knew were faced with the fact that their children were not welcome in sports and recreation programs in the community.  In 1975 Harvey convened a group of like-minded parents to meet.

The result was the creation of Programs for the Developmentally Handicapped (PDH), which would eventually become Jay Nolan Community Services.  PDH began with a recreation/respite program attended by 15 children each Saturday.  The program worked in conjunction with a professor at California State University, Northridge, a patient of Dr. Lapin, who, in order to create stability in staffing, offered working in the program as a course for college credit.  That same year, Harvey was elected to the Board of Directors for the San Fernando Valley Association for the Retarded.  He served as Co-chair for fundraising to build their first workshop and helped finance their first group home with the proviso that it would include one person with autism.

President of the National Society for Autistic Children

In 1976 Harvey became the National President for the NSAC and was instrumental in moving the offices from New York & West Virginia to a consolidated office in Washington, DC.  He also was appointed by The Los Angeles County Board of Supervisors to Area Board X which governed all programs for developmental disability services in Los Angeles County, including monitoring, advocacy and public policy. He would continue to serve on Area Board X for 14 years, including two terms as chairperson.

Expanding Advocacy/Activism

From 1975-1977 PDH saw an astronomical growth.  One program at one site for 15 children had grown to include over 200 people at 6 sites.  Parents were faced with what to do when their children became adults.  To meet that need, PDH moved towards opening group homes, which were state-of-the-art at the time.  To raise money, the board of PDH planned a series of yearly telethons. The Lapin’s mortgaged their home to put up the front money for the first telethon.  In 1977, PDH opened its first group home with a mission to have 50% of the residents from state institutions.

In the 1980’s the Lapins filed suit against the California Department of Developmental Services for discrimination of rates for the severely handicapped in Shawn Lapin vs.DDS.
That same decade saw them take on aversive and corporal punishment in the Hughes bill, to outlaw corporal punishment in the school system.

In 1992 PDH, which had changed its name to Jay Nolan Community Services’ realized the group home system was failing.  Harvey solicited Rubin Mettler, who was CEO of TRW, Chair of the U.S. Roundtable Business Council, Chair of Cal Tech and had a child in the program, to create a “dream team” of advisors to evaluate the programs and make suggestions.  The team took an honest look at people’s lives and advised a conversion to an “Individualized Support” model. (Supported Living)  One of the team members, Jeff Strully, who is known for his work in that area, agreed to become the new Executive Director of Jay Nolan.

In 2006-2008, the Lapins helped sponsor legislation for affordable and accessible housing for persons with developmental disabilities.

Over the years, the Lapins have advocated for the preservation of the Lanterman Act, the only entitlement law in the country for individuals with developmental disabilities. Their dream is that this law should be available for everyone throughout the nation.

In December 2012, Harvey approached California State Senator Bill Emmerson to introduce Self Determination Legislation for individuals with developmental disabilities. For many years Dr. Lapin felt this is one of the great options for positive systems change. Governor Brown signed the bill in October 2013 and it is the first self determination law in the nation. It went into effect January 2014. Harvey and Connie serves on the state task force of the implementation of this new law.

Self Determination

The concept of Self Determination involves the following principles:

  • Freedom – to decide how one wants to live his or her life
  • Authority – over a targeted amount of dollars
  • Support – to organize resources in ways that are life enhancing and meaningful to the individual
  • Responsibility – for the wise use of public dollars and recognition of the contribution that individuals with disabilities can make in their communities
  • Confirmation – of the important role that individuals with disabilities must play in a newly redesigned system.

Freedom – which includes the ability of adults with developmental disabilities to exercise the same rights as all citizens; the establish, with freely chosen supporters, family and friends, where they want to live, with whom they want to live, how their time will be occupied, and who supports them; and, for families, to have the freedom to receive unbiased assistance of their own choosing when developing a plan and to select all personnel and supports to further the life goals of a minor child.

Authority – which includes the ability of a person with a disability or their family to control a certain sum of dollars in order to purchase services and supports of their choosing.

Support – which includes the ability to arrange resources and personnel, both formal and informal that will assist a person with a disability to live a life in his or her community that is rich in community participation and contributions.

Responsibility – which includes the ability of participants to take responsibility for decisions in their own lives, to be accountable for the use of public dollars, and to accept a valued role in their community through, for example, competitive employment, organizational affiliations, spiritual development, and general caring of others in their community.

Confirmation – which includes confirmation of the critical role of participants and their families in making decisions in their own lives and designing and operating the system they rely on.

SD Celebration Dinner

Self Determination Celebration Dinner – October 2013 Senator Bill Emmerson and his wife are in the center

Picture of Governor Brown signing Self Determination Law

Picture of Governor Brown signing Self Determination Law with our dream team

There was a Self Determination Conference held in November 2014. Respecting Choice, Creating Innovation, and Fulfilling Dreams – A Statewide Informational and Networking Conference on California’s New Self-Determination Program which was hosted by the Autism Society of Los Angeles. Scholarships were provided for families and consumers that wanted to attend. Please check out the videos below for highlights from the conference.

Jay Nolan Community Services (JNCS)

In 1993 JNCS began the process of closing group homes and workshop programs and moving people into their own homes with support staff.
In the late 1990s-2002 Harvey Co-chaired the Office of Clients Rights Advocates in the State of California Protection and Advocacy, Inc. (PAI) which gives access to public interest lawyers.

In 2000 the Lapins filed Sanchez vs. Johnson suing the Departments of Health and Developmental Services for discrimination in community care wages.  The case went to Federal court and had a coalition of supporters that included United Cerebral Palsy, Association of Retarded Citizens Easter Seals and California Rehabilitation Association.  The case was lost on standing, not merits.  In 2006, the Lapins initiated legislation in California for accessible and affordable housing for persons with developmental disabilities.

Organizational Advocacy

Connie was appointed to the Board of Directors of Protection and Advocacy, Inc. (a non-profit federal program that protects the rights of Californians with disabilities since 1978.) She served 6 years, including 2 as president during which time a class action lawsuit was filed to promote de-institutionalization. She also co-chaired The Honig Advisory Committee on Special Education (Bill Honig was supt. of Public Instruction in California). In 1991 she was asked to testify before Senator Tom Harkin on the status of the implementation of the ADA (Americans for Disability Act) at the one year anniversary.

More recently she served as a member of the Legislative Blue Ribbon Commission on Autism’s Task Force on Transitional Services and Supports in 2007. Currently she is an active member of The Lanterman Coalition (represents major stakeholders in California’s Community based Developmental Services System) whose mission is to preserve The Lanterman Act-the only entitlement DD legislation in the country. In California it is illegal to be on a waiting list, if determined eligible, to enter the service delivery system. Most states have outrageously long waiting lists for non-educational services (residential, day, respite, etc.)