UC Davis MIND Institute Kicks Off Lecture Series on Neurodevelopmental Disorders

The UC Davis MIND Institute’s Distinguished Lecturer Series began its ninth season this month with a presentation by Yale University researcher Kevin A. Pelphrey, Ph.D., on Neural Signatures of Atypical Brain Development in Autism.

The monthly presentations by nationally and internationally-recognized researchers in neurodevelopmental disorders continue through June 2011. They are intended for both specialists and community members and are free and open to the public with no reservations required.

Upcoming lectures include:

Mark F. Bear, Ph.D., Massachusetts Institute of Technology
Lecture Topic: Fulfilling the Promise of Molecular Medicine in a Developmental Brain Disorder
Lonnie Zwaigenbaum, M.D., University of Alberta
Lecture Topic: Early Developmental Trajectories in Autism Spectrum Disorders
Stephen P. Hinshaw, Ph.D., University of California, Berkeley
Lecture Topic: Attention Deficits and Impulse Control Problems: Mechanisms, Etiology and Multimodal Intervention
Daniel S. Pine, M.D., National Institute of Mental Health
Lecture Topic: Research on Pediatric Anxiety: Using Neuroscience to Generate Novel Treatment
Helen J. Neville, Ph.D., University of Oregon
Lecture Topic: Experiential, Genetic and Epigenetic Effects on Neurocognitive Development
David C. Bellinger, Ph.D., Harvard University
Lecture Topic: The Burden of Childhood Neurological Diseases of Environmental Origin: A Comparative Analysis
Joseph D. Buxbaum, Ph.D., Mount Sinai School of Medicine
Lecture Topic: Genetics of Autism Spectrum Disorders: From Genes to Novel Therapies
Elisabeth M. Dykens, Ph.D., Vanderbilt University
Lecture Topic: Insights into Prader-Willi and Other Genetic Syndromes

---

The UC Davis MIND Institute (Medical Investigation of Neurodevelopmental Disorders) is a collaborative international research center, committed to the awareness, understanding, prevention, care, and cure of neurodevelopmental disorders. In 1998, six families, five of whom have sons with autism, helped found the Institute. Their intent was to bring together experts from diverse disciplines including neuroscience, education, molecular biology, developmental pediatrics, occupational therapy and psychiatry in order to work together to curing neurodevelopmental disorders, starting with autism. The Institute's research projects have since expanded to include Tourette syndrome, fragile X syndrome, ADHD and chromosome 22q11.2 deletion syndrome.

You can find out more about the UC Davis MIND Institute at www.ucdmc.ucdavis.edu/mindinstitute.
For more information about the Distinguished Lecturer Series, contact Laura Lacy, Ph.D., at (916) 703-0254. Full details and a complete lecture schedule are also available by visiting www.ucdmc.ucdavis.edu/mindinstitute/events/dls on the web.

Ruling spotlights problems for developmentally disabled in California's prisons

At the end of August, the Associated Press reported on a preliminary ruling issued by U.S. District Judge Charles Breyer in which he sharply criticized California's prison system in their handling of developmentally disabled inmates. (see: Judge pans Calif.'s mentally disabled inmate care)
Correction officials had petitioned to end the court oversight ordered after a 2001 settlement, but in his preliminary ruling, the judge found that California's prison system still does a poor job of identifying and caring for developmentally disabled inmates nine years after the state agreed to improve services — and he rejected the request to end court oversight.

Instead Judge Breyer ordered the California Department of Corrections and Rehabilitation to submit a new plan to improve employee training and to better identify developmentally disabled inmates, saying he doubted the state can correct the problems on its own.

Attorneys were given twelve days to file objections before the proposed ruling was made final.
Although the state had argued during a six-day trial in May that conditions have improved to the point that it is no longer violating inmates' constitutional rights, other testimony at the hearing suggested otherwise and the judge agreed.

Findings and testimony included:

The system as a whole appeared indifferent to the needs of these inmates despite the efforts of some employees.
Inmates are regularly verbally, physically, and sexually assaulted, exploited, and discriminated against in California prison.
Developmentally disabled prisoners are punished for violating prison rules that they do not understand, and are punished at hearings which they cannot comprehend.
They regularly have their food and property stolen, or give it up to buy protection or help from other inmates. They often lack the help they need with basic hygiene, or with getting routine medical treatment.

Studies show as many as 4 percent of California's inmates are developmentally disabled, yet the prison system has identified and treats less than 1 percent. Advocates hope that this latest ruling will force the State's prison system to make the changes necessary to safeguard the developmentally disabled under their supervision.

The related but unstated concern is how many of these vulnerable individuals end up in the prison system to begin with — but that's a subject for another post perhaps.

---

The Prison Law Office, a nonprofit public interest law firm, filed the original lawsuit in 1996 and fought the state's attempt in this case to end court monitoring.

Prison Law Office
1917 5th Street
Berkeley, California 94710
(510) 280-2621

New California Budget Includes Lanterman Closure Plan

Last Friday, on October 8, 2010, California legislators finally passed this year's long overdue budget.

The California Association of Psychiatric Technicians (CAPT) are reporting that the new budget includes provisions for the closure of Lanterman Developmental Center.

According to information on the group's web site, the budget language, which was not made public until last Thursday includes the following:

• Extend many of the arrangements and provisions used in the closure of Agnews Developmental Center toward closure of Lanterman Developmental Center.
• Provide that the use of department state employees is in effect for up to 2 years following the transfer of the last resident of Lanterman Developmental Center.
• Require the Department of Developmental Services to prepare a report on the use of the department’s state employees in providing services in the community to assist in the orderly closures of Agnews and Lanterman Developmental Centers.
• Require the report to be submitted with the governor’s proposed state budget for the 2012–2013 fiscal year to the budget committees of both houses of the Legislature and annually thereafter.

CAPT Lanterman Chapter President Brad Whitehead noted in the report that, while the budget includes items called for by families and concerned staff to improve continuity of care, opposition remains to the closure of this vital and irreplaceable center.

:: To find out more about the closure of Lanterman Developmental Center, visit the Save Lanterman coalition’s website at www.saveldc.org.

:: You can read the full CAPT report at Just-passed budget includes Lanterman closure plan on www.psychtechs.net

Federal Law Mandates Residential Choice for the Developmentally Disabled

For people with developmental disabilities and their families, it is important to know that choice in care and services exists - and that it is the right of the developmentally disabled and their family members to exercise that choice.

There are agencies and organizations that can help find services and offer support in choosing the most appropriate care for the disabled individual.

VOR, an organization that speaks out for people with mental disabilities and works to unite advocates and educate and assist families, organizations, public officials, and individuals concerned with the quality of life and choice for persons with mental disabilities, is one such organization. VOR includes good information on their website to help the disabled and their parents and advocates understand and access the full array of residential options, including community and facility-based care.

Their information on provisions in federal law for the right of the disabled person and their families to choose residential care is especially interesting and helpful. (See Choice Defined in Law and Use in the Toolkit for Families section of their website.)

Here is just one example cited:

The Developmental Disabilities Assistance and Bill of Rights Act, 42 U.S.C. §2001(c)(3)
(c) POLICY. -It is the policy of the United States that all programs, projects, and activities receiving assistance under this title shall be carried out in a manner consistent with the principles that-
* * *
(3) individuals with developmental disabilities and their families are the primary decision makers regarding the services and supports such individuals and their families receive, including regarding choosing where the individuals live from available options, and play decision-making roles in policies and programs that affect the lives of such individuals and their families.

Again, from the VOR web site:

In the landmark Olmstead v. L.C. ruling, the Supreme Court recognized the need for a range of services for people with mental retardation or other disabilities. This decision  responds to the varied and unique needs of the entire disability community: “We emphasize that nothing in the ADA or its implementing regulations condones termination of institutional settings for persons unable to handle or benefit from community settings...Nor is there any federal requirement that community-based treatment be imposed on patients who do not desire it.”  119 S. Ct. 2176, 2187 (1999).

You can find more information on the Olmstead case on the VOR web site at The Olmstead Decision and the Disability Community.

More information on federal provisions of choice for the disabled can be found at Residential Choice for People with Disabilities.