The State Council on Developmental Disabilities (SCDD) is an independent,  federally-funded state agency that uniquely addresses the needs of its clientele by staffing itself with its target group and their families in addition to representatives of related state agencies. At its core, the council seeks inclusion for the developmentally disabled in all aspects of society. School age children must be included in their community schools; adults need worthwhile jobs. It advocates for comprehensive community services and individualized support by drawing up federally mandated five-year plans and coordinating the activities of 13 area boards through which it implements much of its services. Its funding comes from the federal government. The council works in conjunction with the state Department of Developmental Services, which provides services and funding to individuals through its own 21 nonprofit regional centers. The council aims to ensure California’s estimated 650,000 developmentally disabled citizens the services and support they need to have the same opportunities as all Americans. The state currently serves approximately 250,000 individuals. The council also administers Community Program Development Grants that provide start-up funds for innovative and needed services.

What Is the State Council on Developmental Disabilities? (SCDD website)

Who We Are (SCDD website)

How Many People in California Have a Developmental Disability? (SCDD website)     

2012-2016 State Plan (pdf)

In 1965, 13,500 California residents with disabilities lived in four state hospitals. After appointing a subcommittee to study the problem, lawmakers recommended that the state accept responsibility for people with mental retardation before they enter state hospitals by establishing regional medical agencies that diagnose and offer counseling services.

The next year, the Department of Public Health embarked upon a pilot program to establish two regional centers in Los Angeles and San Francisco. The program was extended three years later throughout the state when the Legislature passed the Lanterman Mental Retardation Services Act.

In 1970, the federal government reauthorized the 1963 Developmental Disabilities Act and provided funding for state councils.

The Legislature significantly expanded involvement with the disabled in 1977 when it passed the Lanterman Developmental Disabilities Services Act. In addition to the mentally retarded, the act established the right to treatment and rehabilitation services for persons with cerebral palsy, epilepsy, developmental disabilities and those with “handicapping conditions found to be closely related to mental retardation or to require treatment similar to that required for mentally retarded individuals, but shall not include other handicapping conditions that are solely physical in nature.”

The Lanterman Act, named for its author, Republican Assemblyman Frank D. Lanterman, guaranteed developmentally disabled Californians access to services and support structures so they could live and function within society like non-disabled residents.

Benefits available include free public schooling until age 22, adaptive equipment, home services, access to Medi-Cal and community-based support and service.

California created the Department of Developmental Services in 1978.

Although SCDD funding comes from the federal government, the community it supports was greatly wounded by state budget cuts in 2011-2012. The Department of Developmental Services saw a quarter billion dollars of General Fund support disappear.

Services and Support for Individuals with Developmental Disabilities in California (SCDD website) (pdf)

The Lanterman Developmental Disabilities Act (by Sylvia Cochrane, Yahoo)

The Lanterman Developmental Disabilities Services Act

Developmental Disabilities Assistance and Bill of Rights Act (Work World)

The State Council on Developmental Disabilities meets at least six times a year and develops a five-year plan, which states the agency’s goals and objectives.  The plan must be approved by the federal Administration on Developmental Disabilities.

Activities of the council include:

Housing—The council provides assistance to clients who want to own their own home with innovative programs like Home of Your Own which brings together real estate agents, mortgage lenders and bankers to arrange down payments and low-interest loans.

Employment—The council demonstrates and promotes innovative employment methods like the supported-employment program, where people get and keep jobs with the assistance of a job coach. 

Education and Early Intervention—The council provides training and technical assistance to school systems to foster integration of disabled students into their neighborhood schools. It also works to break down barriers that isolate or exclude such children by educating policy makers.

Quality Assurance—The council works to train the next generation of advocates by helping the disabled themselves develop leadership skills, participate in the communities, exercise choice in their own lives and play a role in the formation of public policy.

The council also focuses on child care, health, transportation, recreation and other services for the developmentally disabled.

A “developmental disability” is a condition that originates before an individual reaches age 18; continues, or can be expected to continue indefinitely; and constitutes a substantial impairment in three or more areas of major life activity. Developmental disabilities include mental retardation, epilepsy, cerebral palsy and autism.

SCDD is mandated to spend a minimum of 70% of its federal funding to target the plan’s objectives.

The department consists of 29 members who are appointed by the governor, with individual and family consumers representing a minimum of 60% of the membership. To make sure people with disabilities’ needs are met, the council funds 13 regional Area Boards on Developmental Disabilities. The 13 area boards were established by the original Lanterman Act of 1971.

SCDD State  Strategic Plan 2011-2016 (SCDD website) (pdf)

Key Facts about California’s State Council (pdf)

State Councils on Developmental Disabilities (Work World)

All of the council’s $11.4 million budget is provided by the federal government and reimbursements for services rendered. Nothing comes from the state General Fund.

The department spends most (76%) of its money on the regional offices and 13 local area boards. The money is used for advocacy services through volunteers recruited by the council for individuals who have no legally appointed representatives. Around 15% of the budget is spent by the council’s administration, which is responsible for formulating its goals, objectives and activities through development of its five-year plan. The rest of the budget goes for the administration of federal grants to community-based organizations for new and innovative program development projects.

3-Year Budget (pdf)

Critical Report Suppressed

The movement that began in the ‘60s toward shifting the developmentally disabled from institutions into the mainstream population accelerated sharply in California in the ‘90s with some disastrous consequences that were hushed up by the government.

In 1998, the San Francisco Chronicle reported that the Wilson administration had suppressed a study of deaths among the developmentally disabled in community homes.

The report counted 106 deaths among 2,641 people moved from a state hospital between 1993 and 1997. Twenty-nine of those deaths occurred within the first year. Twenty were the result of homicide, automobile accidents, medication errors and other “possibly preventable” causes.

According to the 1997 report, staff competence at the community homes was deemed “inadequate” to meet the needs of severely disabled clients. Workers “often” did not recognize life-threatening conditions and did not try to get medical attention for them.

“Some deaths, while perhaps not preventable, exhibited incompetence, neglect or mismanagement by facility staff,” the report stated.

The researchers reviewed 20 deaths and concluded that 16 were “preventable or questionable.”

The report, which was prepared by the Department of Social Services, suggests that officials found problems with the community homes and then attempted to conceal them from public scrutiny.

“They certainly didn't publicize it—they didn't say anything about it,” said Barbara Turner, president of the California Association of State Hospital Parent Councils for the Retarded. “In that regard, I think they're disingenuous, to say the least.”

Disabled advocacy groups or lawmakers who have been collaborating on reforms never saw the report. And when reporters for the Chronicle requested to see it, the Department of Social Services released a copy with most details about the client deaths and the authors' analysis blacked out.

Disabled Care Report Was Hushed Up by State (by Edward W. Lempinen, San Francisco Chronicle)

Justice System Problems for the Developmentally Disabled

The justice system is “seriously failing” to accommodate the developmentally disabled, according to Joan Petersilia, Professor of Criminology, Law and Society in the School of Social Ecology at University of California, Irvine.

At the time of her 2000 report, 15,518 people within the criminal justice system were classified as developmentally disabled and that regional centers that typically accommodate them do not have the resources or training to handle criminal offenders. California has 21 regional centers.

Petersilia found that criminal justice officials throughout the state knew little about mental retardation and what little they did know about the disabled mostly pertained to the blind, hearing and physically impaired, or the mentally ill, rather than persons with developmental disabilities.

Persons with developmental disabilities who are arrested often can’t avail themselves of basic legal protections. They confess to crimes they did not commit, they don’t understand their right to counsel and they don’t comprehend the legal process. If convicted, the state lacks specialized rehabilitation programs for them.

Many of these findings were echoed in a report partially authored by SCDD in 2003, and in its five-year plan for 2002-2006.

Doing Justice? The Criminal Justice System and Offenders With Developmental Disabilities (by Joan Petersilia, UCI Medical Center) (pdf)

Abuse and Neglect of Adults with Developmental Disabilities (Protection and Advocacy, Inc., State Council on Developmental Disabilities, USC University Affiliated Program and The Tarjan Center for Developmental Disabilities, UCLA) (pdf)

2002-2006 State Plan (SCDD website)

It’s All About Jobs

“Employment is the first question we ask about most adults in society.”

With that declaration, the SCDD opened its August 2011 report to the governor and Legislature with an affirmation of its prime directive to make the developmentally disabled in California self-sufficient. It then proceeded to lay out a plan called Employment First for achieving its goal.

Among its suggestions were:

• Require that government contractors’ workforce include at least 0.5% individuals with developmental disabilities

• Require the Employment Development Department (EDD) to provide training at the county level to encourage identification of employers/contractors who can hire individuals with developmental disabilities as part of their contracts with EDD.

• Require the State Workforce Incentive Board to use part of its discretionary funds to encourage community-based employment services to enhance their services for developmentally disabled people.

• Revise rate structures at the Department of Developmental Services to incentivize integrated competitive employment outcomes.

• Require the Department of Rehabilitation, Department of Developmental Services and regional centers to collaborate at least annually to strategize over implementing the suggestions in the Employment First plan.

Employment First (SCDD) (pdf)

Community Care vs. Institutionalization

A decades-long trend in the United States toward community care rather than institutionalization has changed the way we treat the developmentally disabled. Integration is the goal, not segregation.

Yet, a debate continues over what to do with the remaining institutions, and it was fueled by a 2011 report from the federal Administration of Developmental Disabilities. The agency, which is influential with the state councils on developmental disability across the nation, is moving toward finalizing a five-year strategic plan.

Its recommendation to close the country’s remaining institutional care facilities unleashed a torrent of comment both pro and con.

California operated eight state hospitals in 1968 with 13,300 residents. Passage of the Lanterman Act in the late ‘60s initiated the relocation of the disabled away from institutions. The state now has four state-run institutions serving around 2,000 residents, but the smallest of them, Lanterman Developmental Center, was in the process of being shut down as of August 2011. 

No, Don’t Shut Them Down

The group VOR has been around since 1983 and, unlike most advocacy groups, opposes the elimination of institutions for the developmentally disabled. A petition it circulated for submission to Congress points out that some people have limitations so severe they function at the level of a newborn or infant.

VOR members argue that some people don’t have families to care for them and group home support is insufficient. They also seek a larger voice for families and guardians in the placement decision-making process.

“Given the diversity of persons in the developmental disabilities community, we strongly believe that people with MR/DD and their families and legal guardians should have the right to choose from a full continuum of quality support options to meet the wide range of needs,” the petition states. “One size does not fit all.”

Advocates for keeping institutions open argue that we have spent decades mainstreaming those developmentally disabled people who can function on the outside. What remains, for the most part, are the severely damaged who could not function in a small group setting without intense supervision or even at home with a loving family.

VOR members argue that care in institutions tends to be better than outside and a controversial study in the late ‘90s by researcher David Strauss at University of California, Riverside, agreed. Strauss said his studies of mortality rates showed there was inadequate care outside the institutions. Strauss found mortality rates were 72% higher in the community than in developmental centers between the years of 1980 and 1992.

In another study, he found mortality rates 50% higher in community care than in the centers in 1993 and 1994.

Dennis G. Amundson, who was director of the state Department of Developmental Services, agreed with the study and said that the death rate is higher in group homes.

“They are being moved in haste,”says Barbara Turner, president of the California Association of State Hospital Parent Councils for the Retarded. Turner added. “This is the most rapid deinstitutionalization for developmentally disabled individuals that has occurred in the United States.”

“This is being driven by money—money, money, money,” says Turner. You have some of the most profoundly retarded people, with complex medical problems . . . and you're sending them into communities that aren't prepared for them and don't know how to deal with them. “The system has gone nuts.”

The state closed the Camarillo Developmental Center, the Agnews State Center, the Stockton Developmental center and plans to close the Lanterman facility in the future.

Critics liken the closing of the facilities to what happened in the 1970s when mental hospitals were shut down and many of the mentally ill were pushed out onto the streets.

They argue the effort is being driven by the state's desire to save money, rather than wanting to provide decent care for the disabled. In 1997, it was estimated the average cost to be about $100,000 a year to keep a patient in a state hospital compared with as $8,000 a year for a group home.

Yes, Shut Them Down

Supporters of de-institutionalization make a multi-pronged argument for closing down large state-run facilities.

It’s a civil rights issue for developmentally disabled people who don’t want to be locked up in an institution.

People in general, not just the disabled, thrive when given control over their lives.

It’s important for society to be inclusive and embrace all its members; we shouldn’t hide the ones that discomfit us.

Only families and communities can provide the loving support necessary for people to grow.

It makes economic sense to educate and train people so they can be contributing members of society and you can’t effectively do that in a large institution where they are simply a burden on the state.

And many disagree with the study by Strauss that institutions are safer for the developmentally disabled. Advocates for independent living cite a five-year state-commissioned study that came out about the same time as the Strauss study. It found improvement in the quality of life for developmental-center residents who moved into smaller living arrangements in the community.

Study author James Conroy said surveys and face-to-face interviews with more than 1,000 former residents showed that most were better able to take care of themselves, were more likely to be working and, most significantly, showed improvements in their behavior since leaving the centers. Conroy added that the developmentally disabled are prescribed more antipsychotic drugs once they leave the centers.

William Coffelt, who sued the state in 1989 after his teenage son was beaten and left in a pool of blood in a Sonoma State Hospital shower two weeks after he moved there, wanted the centers closed, but said the state had to do a better job caring for people outside the institutions.

Coffelt settled the case in 1993, with the state agreeing to move 2,000 of the approximately 6,950 developmental-center residents into the community by 1998. It was the beginning of the big push in California toward integrating the developmentally disabled into society.

According to a 1995 state study, it costs $92,161 a year to keep one person at a developmental center; the average bill at a community home was $54,406.

Patients moved to community homes “are enjoying a higher quality of life,” according to the report. “They receive more service.”

Debate Over Institutions Flares As Feds Seek Comment (by Shaun Heasley, Disability Scoop)

Envisioning the Future (Administration of Developmental Disabilities) (pdf)

VOR

Helping or Hurting? (by Dianne Barth, Stockton Record)

State's Care Of Disabled Assailed (by Edward W. Lempinen, San Francisco Chronicle)

Death Rate Rises in Shift Toward Community Care  (by Edward W. Lempinen, San Francisco Chronicle)

Study on Disabled Rebuts Critics (by Dianne Barth, Stockton Record)

Some Ex-Patients Thrive on Outside, Others Struggle (by Fred Alvarez, Los Angeles Times)

Finding a Place for the State's Severely Mentally Disabled (by Garrett Therolf, Los Angeles Times)

Alan Kerzin, 2005 – 2010

Judy McDonald, 2000 – 2005

Roberta Marlowe, 1995 – 2000

James Shorter

James Bellotti