CDCAN REPORT #174-2011: Disability rights pioneer Dr. Richard Koch memorial service October 8th

Remembering Lives That Mattered:

DR. RICHARD KOCH MEMORIAL SERVICE SET FOR OCTOBER 8TH SATURDAY 4:30 PM IN PASADENA AS FAMILY AND FRIENDS REMEMBER AN ICONIC FIGURE IN DISABILITY RIGHTS

Widely Respected Medical Research Pioneered Early Treatment and Intervention for PKU & Other Metabolic Disorders That Can Cause Major Developmental Disabilities - Early Advocacy Efforts and Work in 1950's and 1960's Play Major Part  In the Creation of First Community-Based Services for People With Developmental Disabilities That Became Model For Nation - Died At Age 89 September 24th At His Home - Death Is Among Several In Past Weeks and Months of Major Disability Rights Advocates Including Jim Troesh, Sandy Varga and Laura Williams

SACRAMENTO, CA (CDCAN)  [Last updated 10/08/2011 03:00 AM] - Memorial services are scheduled for Saturday afternoon, October 8th at 4:30 PM at the All Saints Church, 132 N. Euclid Avenue, in Pasadena for Dr. Richard Koch, an iconic figure in the history of disability rights, who was one of the last surviving pioneers whose work helped to create California's model of community-based services known as the regional center system, for infants, children and adults with developmental disabilities.

Dr. Koch, - pronounced "coke" - who was also equally widely known and respected for his groundbreaking research work in the area of medical research and healthcare for children and adults with developmental disabilities, died at age 89, in his home on September 24, 2011.  [He is pictured left in a photo from January 2011]

Koch's Passing One Of Several Other Deaths Of Leading Disability Advocates  From Los Angeles Area Including Actor Jim Troesh

Koch's death comes at a time when the disability community across the State, but especially in the Los Angeles area, face a string of deaths of other leading and respected disability advocates:

JIM TROESH. - disability rights advocate,actor and screenwriter Jim Troesh, who was best known for his re-occurring role for three seasons on the 1984-1989 NBC Drama series "Highway To Heaven" that starred the late Michael Landon. died October 1st (Saturday).  Troesh, who was 54 years old, died at St. Joseph Medical Center in Burbank. A memorial service will be held on October 21st, Friday, at 2:00 PM in North Hollywood at a location still to be announced. (there will be more details about that service and the life and work of Jim Troesh in a separate CDCAN Report). Donations can be made in lieu of flowers in Troesh's name to:

Total Improv Kids - Jim Troesh Scholarship
c/o Linda Fulton
Avery Schreiber Theater  
11050 Magnolia Blvd
 North Hollywood, CA 91601

SANDY VARGA - a respected and loved disability advocate and chair of the Personal Assistance Services Council of Los Angeles County (the county's In-Home Supportive Services public authority) who died unexpectedly on the same day as Dr. Koch (September 24th).. Her death stunned and saddened advocates across the State. As of October 7th, plans for her memorial services are still pending.  Her family request that in lieu of flowers, people can send donations to the Disability Rights Legal Center (DRLC). People can choose to earmark their donation to DRLC for the Cancer Legal Resource Center - one of DRLC's programs.  All donations are tax deductible - the DRLC tax ID # is 95-2960607.  Donations can be mailed to: 

Disability Rights Legal Center
800 South Figueroa Street, Suite 1120
Los Angeles, CA  90017
ATTN: In Memory of Sandy Varga
OR people can submit donations online:
https://www.disabilityrightslegalcenter.org/help/donate.cfm
You will see a dropdown where you can indicated that the donation is in memory of Sandy Varga

LAURA WILLIAMS, who lived in Los Angeles County and was a respected long time disability advocate and present of Californians for Disability Rights (CDR) died unexpectedly in July. A memorial service was held on July 16.  People can still send messages and cards of sympathy and support to her family (she had two adult children - a son, Mark and a daughter, Alayna) that can be sent to:

Alayna Alariana
3000 Burgundy Road
Alexandria, VA 22303

Donations in Memory of Dr. Koch

Donations in memory of Dr. Koch and his decades of work and commitment to children and adults with developmental disabilities can be made to either:

Mt. Hollywood Congregational Church
4607 Prospect Avenue
Los Angeles, CA 90027

OR to the

Guthrie-Koch Scholarship Fund
6869 Woodlawn Avenue, NE #116
Seattle, WA 98115-5469.

Koch Pioneered Mobile Clinics That Brought Medical Services To Disabled Children

Dr. Koch pioneered mobile clinics that brought medical services to the disabled and led a landmark effort to screen newborns for a type of mental disability that can be treated with a no-protein diet, effectively putting an end to the disorder.

He is survived by his wife, Jean; daughters, Jill Koch Tovey, Christine Koch Wakeem and Leslie Koch and sons, Tom and Martin.  Koch also leaves 10 grandchildren and 9 great-grandchildren.

Over a span of more than 50 years, Dr. Koch conducted extensive research on Down syndrome, PKU (Phenylketonuria which causes mental retardation), and other rare metabolic disorders.

According to friends and people with worked with him, even in his final years, Koch's  energy even after he officially retired,  "defied" description, as he continued to bicycle to work seeing patients, visiting jails, consulting with Regional Centers, speaking at international meetings, and fishing, skiing, backpacking and gardening.

Served As Founding Director Of One of the First Regional Centers

Dr. Koch was remembered by family, friends and families with children with developmental disabilities across the State and nation as one of the early advocates to fight for community-based services and supports for persons with developmental disabilities in their own homes as an alternative to placement in a health facility, known then as state hospitals (now called "Developmental Centers"). That concept in the 1950's and 1960's that were considered revolutionary -  though at the time, both federal and state policies - and funding - were nearly totally dedicated to only supporting a person who lived those facilities, giving thousands of families little choice or options.

In 1957 Koch started a traveling clinic that brought a team of professionals to 13 Southern California counties to serve children with developmental disabilities. It was groundbreaking work that would eventually evolve into a community-based system of services and supports for persons with disabilities that would become a model not only for the State, but for across the nation.

Koch served as founding director of one of the first regional centers in the State - what later became known as Frank D. Lanterman Regional Center - that at the time was a pilot program under Children's Hospital in Los Angeles. He was fondly remembered by Diana Anand, the current director of the Lanterman Regional Center in Pomona, who mourned his passing.

In large part to Koch's early work and commitment for community-based services for people with developmental disabilities, in 1966 legislation was signed into law by then Governor Pat Brown - the father of the current California Governor, Jerry Brown - that authorized the creation of pilot regional centers to test out the idea of community-based services.

That legislation included many elements of what later developed into what is now known as the Lanterman Developmental Disabilities Services Act - the first and only civil rights act specifically for persons with developmental disabilities in the nation. The first real version of that act was passed in 1969 by a Republican controlled Legislature and signed into law by then Governor Ronald Reagan.  Since then that civil rights act has evolved, including expansion of services and eligibility - and later, in the early 1990's and during the past 10 years, major reductions and cuts in eligibility due to State budget shortfalls.

Eventually the system grew to the current 21 non-profit regional centers - though the caseload over the same time period swelled dramatically to currently over 240,000 children and adults with developmental disabilities, with the number rising faster in large part in recent years due to overwhelming numbers of children diagnosed with autism spectrum disorders.

While the system of regional center community-based services and supports has its share of critics, including many families who have seen reductions in services for their children for a variety of reasons including major permanent cutbacks and policy changes passed by the legislature and approved by governors over the past 10 years due to ongoing and unresolved State budget deficits, the early pioneering work of Dr. Koch remains widely respected.

Koch's Research Work Critical in Prevention

As a researcher, Koch devoted much of his career to preventing disability, specifically phenylketonuria, commonly called PKU, a hereditary metabolic disorder that can cause mental disability.  A broad range of conditions including PKU, Tay-Sachs disease and Wilson's disease are classified as metabolic disorders. Diagnosing a metabolic disorder can be difficult, as a wide variety of problems create similar symptoms; many patients end up enduring a battery of tests and seeing multiple experts before the real cause of their problems is identified.

Early discovery allows for prevention, since the faulty gene that causes PKU enables the amino acid phenylalanine — contained in many foods — to build up in the blood and cause brain damage. PKU babies were placed on a tasteless no-protein diet and kept on it until they were about 10 years old, when their brains were sufficiently formed.

With colleague and friend Dr. Robert Guthrie, Dr. Koch was an early and key advocate for mandatory new born screening programs in the country, and in 1962 pushed hard to eventually see passage and enactment of a state law in 1966 that required such mandatory screening for PKU with a simple blood test.  It was reported that In California alone, over 8 million infants have been tested for the PKU disorder since the inception of the screening program. Almost all of the people born in California, who are now younger than 40-years-old, have been tested for PKU.

By the late 1960s, while the disease was largely under control. But around 1980, state health officials noticed that female PKU patients saved from disability were giving birth to babies with mental disabilities and other disorders. PKU mothers who followed a regular diet were developing high blood levels of phenylalanine that damaged the fetus. It was discovered that the disease could be heraldry

With Koch coordinating the effort, Children's Hospital served as the hub of a national drive to collect data on adult PKU patients and encourage those who were pregnant to return to the no-protein diet to increase their chances of having a healthy baby.

Almost until the end of his life, Koch continued to treat PKU patients whom he first saw as infants decades ago, seeing them at his home near the hospital he retired from about five years ago.

Dr. Koch was also involved in research to establish guidelines for getting FDA approval for biopterin for the treatment of PKU in the US.  This product is now available under the trade name "Kuvan" and is the newest treatment for many people diagnosed with PKU.

Koch also pioneered in the treatment of persons with PKU who are disabled because they were born before newborn screening.

Koch received numerous awards recognizing his work from various national and state health and disability associations and organizations including in 1998 [In 2004, a new group home specifically for late-treated persons with PKU was named in his honor – The Koch-Vagthol’s Metabolic Residential Care Center in Burbank, California and in 1998 received the prestigious H. Russell Smith Award for Innovation in Pediatric Biomedical Research. The award - the winner is selected by research peers -  was established in 1988 to recognize individual scientists who have made outstanding contributions in the field of pediatric research at Children's Hospital Los Angeles

Author of Many Publications and Books - Served In Mid-1960's As Arc State President

Koch was also the author or co-author of more than 158 publications, 53 book chapters, and 3 books.  His wife Jean Koch authored a book titled "Robert Gutherie: The PKU Story".

Koch was a member of numerous associations, national and local, that focus on the problems of people with developmental disabilities, including the Arc, where he served in the mid-1960's as a local chapter and state association president.

Early Life - Koch Served in Army Air Force And Was Shot Down Over Germany

Dick Koch was born in North Dakota, but soon his parents moved to Petaluma, California where he grew up with his eight brothers and sisters.

Koch was born November 24, 1921, in Dickinson, North Dakota., the sixth of nine children of Valentine Koch, a sheep farmer, and his wife, Barbara. His family moved to Petaluma, California when Richard was 7.

Following graduation from Petaluma High School in 1941, he shortly began his service in the US Army Air Force, eventually flying 13 missions. He married Jean Holt in 1943 and eventually they raised five children.

In April 1944, Koch and his fellow Army Air Forces crew members were shot down while flying over Germany in a B-24 Liberator. and was immediately captured. While in the POW camp, Koch bartered for a typewriter and started a POW newspaper. He was imprisoned for 13 months.

Once Koch was home back in the US, he bought an Army surplus Jeep for $150 that came in a crate, assembled it and drove it across the country to medical school.  In 1951, Koch earned a medical degree from the University of Rochester in New York, joined Children's Hospital Los Angeles and embarked on a groundbreaking career in developmental disabilities.

With his family, he often backpacked, once hiking 110 miles round-trip from Mineral King in Sequoia National Park to Mt. Whitney and trekking 150 miles on the John Muir Trail.

He took a leave of absence in 1970 to spend a year in Peru with his family as a medical volunteer with Project Hope. Koch also taught medicine at USC.