Lives that Matter

Sargent Shriver and John F. Kennedy (1 of 18)

Robert Sargent Shriver, father of former California First Lady Maria Shriver; brother-in-law of John, Robert and Edward Kennedy; founding director of the Peace Corps and several War On Poverty programs in the 1960s, died January 18, 2011 at Suburban Hospital in Bethesda, Maryland.  Shriver, born November 1915, was 95 years old. Shriver announced in 2003 he had Alzheimer's disease.

Nancy Seyden (2 of 18)

Nancy Seyden of Davis, a longtime and beloved advocate for people with disabilities and senior rights in Yolo County and across the state, passed away on January 22, 2010.

Ed Roberts (3 of 18)

Roberts, who passed away on March 14, 1995 at age 56, was a former director of the Department of Rehabilitation and co-founder of a respected disability advocacy organization in the bay area, the World Institute on Disability (WID) and considered the “father” of the independent living movement.

• Edward Verne Roberts was born January 23, 1939.
• Ed contracted polio as an adolescent in 1953. For the first year of his illness, he spent nearly all of his time in a hospital. Eventually he left the hospital, but had to spend vast expanses of time in an iron lung.
• His career as an advocate began when a high school administrator threatened to deny him a diploma because he had not completed driver's education and physical education.
• After attending the College of San Mateo, in 1962 he was admitted to the University of California at Berkeley where he became the first severely disabled student to attend UC Berkeley.
• When his search for housing at the university met resistance, in part because of the iron lung that he slept in at night, the director of the campus hospital offered him a room in an empty wing. Ed accepted on the condition that it be treated as dormitory space.
• Other significantly disabled students joined him there over the next few years. They began calling themselves the "Rolling Quads."
• In 1968 when two were threatened with a loss of services by a rehabilitation counselor, the "Rolling Quads" organized a successful protest that led to the counselor's transfer. Their success on campus inspired the group to advocate for curb cuts, opening access to the wider community, and creating the first student-led disability services program at a university in the nation
• The student program in turn led to the creation, in Berkeley, of the nation's first center for independent living. Roberts assumed leadership of the Center for Independent Living, Berkeley, and guided its development as a model for disability advocacy and self-help services across the nation and around the world.
• Ed Roberts earned a B.A. in 1964 and an M.A. in 1966, both from UC Berkeley, in Political Science. He also taught political science at the university for six years.
• In 1975, Governor Jerry Brown appointed Ed Roberts Director of the Department of Rehabilitation. He served in that post until 1983 when he co-founded the World Institute on Disability.
• Ed Roberts died from natural causes on March 14, 1995.

Donald Roberts (4 of 18)

Donald Roberts at a People First advocacy conference in 2008.

Elbert Johns (5 of 18)

The world seems to continue on, seemingly without notice, even when tragedy strikes or someone dies. And yet, the world does notice. At least some of the world, some of the time.

But every life matters.

Elbert Johns died Monday morning, July 14, 2008 at Bloomington Hospital, in Bloomington, Indiana after a battle with cancer.  He was 64 years old.  To his family, he was a beloved husband and father who brought joy and happiness.  For many others who knew him as a friend and disability advocate, he was a good and decent man, who we loved and respected.  His death comes as a tremendous shock.

He was funny, he was humble, he was strong, he was passionate and he was modest.  He was devoted and committed to his family and to the community of people with disabilities.  And he will be missed. Terribly.

For those who did not know him or know of him, he was a human being who defined the words "unsung hero" because of his work fighting for the rights of children and adults with developmental disabilities to live in one's own home and community. He fought for the rights of self determination, inclusion and opportunity. Toward those efforts, he co-founded a website resource that connected critical information to tens of thousands of people with disabilities and their families across the nation.

But he did his work and advocacy often behind the scenes, without flair, fanfare or notice - but with great humility that comes with deep and unshakeable commitment.

The whole commentary by Marty Omoto is available here:  Elbert Johns - Remembering a life that matters

Aaron Dimmitt (6 of 18)

Aaron Dimmitt, son of Michael and Barbara, passed away September 7, 2006 just weeks before his 23rd birthday.  He had down syndrome and many other developmental and physical disabilities, including disabilities that may have been linked to autism.  Most of all, he was a beloved son to his parents and brother.

Thomas "Tommy" Yerby (7 of 18)

Parents aren’t supposed to outlive their own children and when it happens, it seems there is a heavier burden of loss and a deeper feeling of emptiness and sadness that never fades away.  And so it is with Thomas “Tommy” Yerby, the adult son of Ed and Georgia Yerby, who passed away in his sleep on December 28th, unexpectedly, after spending a pleasant and happy Christmas with his family.

Tommy Yerby had developmental disabilities, and lived until a few years ago, at Agnews Developmental Center and he was, according to his family, happy there.  When Agnews began closing, Tommy was transitioned into a home in Morgan Hill (near Gilroy and San Jose) and lived there, according to his family, happily -  enjoying the day program he attended, regular outings and attending regularly church on Sundays.

His unexpected death was a shock to his family and friends.

Georgia Yerby, his mother, has been a respected, tireless and dedicated advocate for her son over the years.  She is the current president of an association of parents and family members who had children or loved ones who lived at Agnews during the time it was open.  They were a key element in making the closure and transition the success it was – though like so many other families across California  – they also looked at a future that seems so uncertain and unstable.

It doesn’t matter what one’s values are regarding developmental centers, nursing homes, community-based housing or the issue of inclusion or confusing principles that one believes in with positions that one takes on a given issue.  And it doesn’t matter that Tommy Yerby wasn’t well known outside his own community of family and friends – or that he didn’t testify at a budget hearing or speak at a rally or serve in public office.

At the end of the day, and what it all comes down to is that every life matters – and that those lives are – or were – touched by others who loved and needed them.  No matter where they are or what they believe in. 

“We all breathe the same air, we all cherish our children’s future - and we are all mortal…”, as John F. Kennedy once said.

Tommy Yerby’s life mattered.  To his family. To his friends.  To his community.  The lives of his family and friends matter too.

And so as we approach yet another terrible budget year and face yet another terrible budget battle, let’s pause and take a moment to remember that the battle is really about what we fight for – not against.  It is about a person’s life.

Remember Tommy Yerby and his family and friends.

Robert "Bob" T. Matsui (8 of 18)

Former congressional member Robert "Bob" T. Matsui.  Matsui helped pass the Japanese-American Redress Act which provided an official apology from the United States federal government for the Japanese-American internment program.  Matsui passed away January 1, 2005 from a form of bone marrow cancer.

Marty Omoto issued a commentary days after Matsui's passing in 2005.

Sheri Omoto Chapman (9 of 18)

Sheri was a loving parent and fought hard for her older son who had a physical disability that later operations helped to partially correct. She fought hard for his full inclusion in school and other activities without understanding the politics of what she was doing. Like most people, she didn't make speeches to crowds or lobby the Capitol or understand the workings of government.  She didn't need to.  And what an advocate she was for her kids and our older sister.

She leaves behind the love of her life, her husband Andrew, and four wonderful children, Stan, age 24, Tomiko, age 22, Jacquie, age 19 and Andrew Jr, age 12.

Read the full commentary here:  Many thanks regarding my sister Sheri Omoto Chapman

Cesar Chavez (10 of 18)

We draw our strength from the very despair in which we have been forced to live. We shall endure.

We shall strike. We shall organize boycotts. We shall demonstrate and have political campaigns. We shall pursue the revolution we have proposed. We are sons and daughters of the farm workers' revolution, a revolution of the poor seeking bread and justice.

Until the chance for political participation is there, we who are poor will continue to attack the soft part of the American system - its economic structure…These attacks on the status quo will come, not because we hate, but because we know America can construct a humane society for all its citizens... - Cesar Chavez

Harry Cota (11 of 18)

Harry Cota Lead Plaintiff in Adult Day Health Care Lawsuit Dies

Ironically while the budget spending cuts piece moves forward, including the elimination of Adult Day Health Care, Harry Cota, age 61 the lead plaintiff in a federal lawsuit against the Department of Health Care Services that blocked cuts in 2009 to Adult Day Health Care as violations under the federal Americans with Disabilities Act (ADA), passed away on yesterday, March 7, 2011, after a battle with cancer.  Services have not been announced and are pending.

Cota, in a letter to Governor Brown just days before his death, pleaded that Adult Day Health Care be spared from elimination writing that "My life has been made so much better because of [Adult Day Health Care], and so have the lives of thousands and thousands of Californians. Please don't cut this program."

The spending reduction package approved last week by the Budget Conference Committee that will come up for a vote in the Assembly and State Senate on Thursday, includes the elimination of the Adult Day Health Care program, a Medi-Cal “optional benefit” as proposed by Governor Brown.  “Optional benefits” under the federal Medicaid program are those services or benefits that states are not required to provide.

The Budget Conference Committee however agreed to a compromise that allocated $85 million in State general funds to transition over 27,000 adults with disabilities and seniors into other Medi-Cal services and to recreate under a Medi-Cal waiver a new form of Adult Day Health Care centers that can implement possibility different eligibility and other measures to make the program more cost effective and efficient.

Despite the assurances of Budget Conference Committee chair Assemblymember Bob Blumenfield (Democrat – Van Nuys, 40th Assembly District) to keep their doors open, many of the over 300 community-based organizations and hundreds of workers are worried about an uncertain future.

More on the Life and Advocacy of Harry Cota

A disability and senior rights advocate, Cota was the lead plaintiff in the 2009 federal lawsuit, Cota et. al v. David Maxwell-Jolly, et. al. filed by Disability Rights California (DRC).

Disability Rights California noted that Cota was a “passionate advocate for himself and his fellow [Adult Day Health Care Center] participants, traveling from his home in Hayward to Sacramento to testify about the importance of the…program to seniors and people with disabilities.“

Friends said that Cota considered his fellow participants, and the staff at the Adult Day Health Care program he attended for eight years, “as part of his family.”

Until the end of his life, with a letter sent to the Governor just days before his death, Cota remained strongly committed to his work in helping others with disabilities, and hoped that the Adult Day Health Care program would continue, even if his own life did not.  [CDCAN Note:  Harry Cota will always be missed, while his life and work will always be honored and remembered.  It is ironic and sad that this news comes during this budget crisis as the program he loved so much is slated for elimination.  The real lesson of his life – and his work – is for all of us to remember that the federal and state Constitution, our laws and any program is always about a human life.  – Marty Omoto]

Background of Lawsuit That Involved Cota as Lead Plaintiff

• July 2009 - Legislature passed and Governor Schwarzenegger signed into law, the 2009-2010 State Budget as revised in July 2009 that included new reductions to Adult Day Health Care services.
• August 18, 2009 - several seniors with disabilities, including Harry Cota,  filed a class action lawsuit to stop devastating cuts in Adult Day Health Care services. The case was originally filed as Lillie Brantley et. al v. David Maxwell-Jolly but upon the death of Brantley, the case name has been changed to Harry Cota et. al v. Maxwell-Jolly.   The lawsuit was filed in federal court in the Northern District of California, the case by Disability Rights California, AARP Foundation Litigation, National Senior Citizens Law Center, the National Health Law Program and the law firm of Howrey LLP.
• September 10, 2009 - Judge Saundra Brown Armstrong granted Plaintiffs' Motion for a Preliminary Injunction, that blocked the across-the-board cut from a maximum of five to no more than three days per week.  The federal judge found that those filing the lawsuit would be put at high risk of requiring hospitalization or placement in nursing homes should their access to Adult Day Health Care services be cut back from a maximum of five four-hour visits per week to a maximum of three four-hour visits. The federal judge found that such a risk would be in violation of the federal Americans with Disabilities Act, writing that "The harm in this instance is particularly irreparable and imminent,” noting that "As discussed, these services are necessary and critical to Plaintiffs' physical and mental well-being…Given the tenuousness and complexities of their conditions, an interruption in their care, even if temporary, will have serious consequences for Plaintiffs."
• February 24, 2010, the same federal District Court granted Plaintiffs' second Motion for Preliminary Injunction, which challenged restrictive new eligibility criteria, which would have permanently eliminated all Adult Day Health Care services for about 15,000 adults and seniors with disabilities – including those with developmental disabilities.  The federal District Court found that Plaintiffs were likely to prevail (win) on their claims that the new, restrictive eligibility would violate the Americans with Disabilities Act, federal Medicaid law, and due process under the United States Constitution and that the balance of hardships weighed in Plaintiffs’ favor because they face the loss of services that would be critical to avoid institutionalization. The federal District Court rejected the Schwarzenegger Administration’s argument that they are “entitled to cut services at will to accommodate the State’s budgetary constraints.”
• It was one of the few instances in California where the federal Americans with Disabilities Act played a primary role in a federal judge’s ruling to stop or block a reduction impacting people with disabilities and seniors.
• February 2010 – The State filed an appeal to the US 9th Circuit Court of Appeals.  The case is still pending [the case does not impact the Brown Administration’s proposal to eliminate the entire Adult Day Health Care program as a Medi-Cal “optional benefit”,which the Budget Conference Committee approved last week]

Laura Hershey, disability and women's rights advocate, writer and poet (12 of 18)

Laura Hershey, a widely respected and loved Colorado based disability and women’s rights advocate, poet, writer, died Friday Nov. 26, 2010, unexpectedly after a short illness. She was 48 years old.  She is survived by her partner, Robin Stephens and a 14 year daughter Shannon, who the couple adopted and was the subject of Hershey’s last posted poem (see below).

"She was an intelligent, funny, active writer, activist and mother," Stephens, said Saturday to the Denver Post. "She was a genius who lived with disability and lived well."

Her death stunned and saddened thousands of people across the nation who followed her advocacy and work including various postings on the internet and published writings.  Her final posting was made on November 24th on the Christopher and Dana Reeves Foundation website (see below for that complete posting) that focused on the different aspects of “gratitude” during Thanksgiving.

The whole article about Hershey's death can be found here:  CDCAN REPORT #227-2010: Laura Hershey, disability and women's rights advocate, writer and poet passes away

Paul K. Longmore, professor, writer and disability advocate (13 of 18)

• TODAY - Memorial Service for Professor Paul Longmore At San Francisco State University 2 PM
• Family, Friends, Colleagues, Advocates and Others Will Gather to Remember The Life and Work of Widely Respected and Loved Disability Rights Advocate, Author, Historian and Educator

MARTINEZ, CALIF – ENROUTE TO SAN JOSE (CDCAN) [Updated 10/23/2010  11:55 AM  (Pacific Time)] -  Family, friends, colleagues, co-workers and advocates will gather today (Saturday, October 23rd)  for a public memorial service remembering the life and work of Professor Paul K. Longmore, a widely respected, influential and loved disability rights advocate, historian, educator and author, beginning at 2 PM (doors open at 1 PM) at San Francisco State University, Seven Hills Conference Center in San Francisco. 

As previously reported, Longmore, age 64, died unexpectedly on August 9th of natural causes. His passing stunned friends, co-workers and advocates across the State, and has been followed by an outpouring of sadness and tributes across the state leading up to this memorial service.   [CDCAN Note: for those who cannot make this memorial – please take a moment today to remember his life and what he did – and how his work will always be a constant living reminder to encourage us to continue to never give up on fighting for the rights that he also fought for – to value the work and life of everyone in our community.  Many of us who are attending the annual conference of the California In-Home Supportive Services Consumer Alliance (CICA) in San Jose today and not able to make the memorial, will take pause to reflect on Paul’s life and the profound difference he made in our community, in our state and in our nation and the world.  He is and will always be missed and treasured  – Marty Omoto]

He last appeared and testified at the State Capitol earlier this year before an Assembly informational hearing chaired by Assemblymember Wes Chesbro (Democrat – Eureka) that focused on people with developmental disabilities.

PROFESSOR PAUL LONGMORE PUBLIC MEMORIAL SERVICE

The family, friends and colleagues of San Francisco State Professor Paul K. Longmore invite you to join them in reflecting on and celebrating his life:

DATE AND TIME:

TODAY - October 23, 2010 – Saturday afternoon

• 1:00PM - Doors open
• 2:00PM - Celebration and Reflection
• 3:00PM - Reception

LOCATION OF MEMORIAL

San Francisco State University
Seven Hills Conference Center
Near State Drive and Font Boulevard
San Francisco, CA 94132
Phone: 415-338-3972

Note: The main address to the campus is  1600 Holloway Avenue

FOR DIRECTIONS AND PARKING:

Go to the university’s website at:

http://www.sfsu.edu/~meetings/location.html

ACCESSIBLE ACCOMMODATIONS:

The location of the memorial services is, according to those organizing the memorial, wheelchair accessible and the event will be open captioned. 

To request any additional reasonable accommodations, please contact 415-338-2954 or cwallin@sfsu.edu by Monday, October 11, 2010.

MEMORIAL GIFTS AND DONATIONS:

The Longmore family indicated that instead of flowers, people  donations would be welcomed and appreciated to the Professor Paul K. Longmore Memorial Fund at San Francisco State. 

The fund will be used to honor, preserve and advance Paul's legacy and work in Disability Studies.

Please make your check payable to the San Francisco State University Corporation, with "Dr. Paul Longmore Memorial Fund" written in the memo

Tax deductible contribution can be mailed to:

San Francisco State University
University Development
Attention: Andrea Rouah
1600 Holloway Ave.,  ADM 153
San Francisco, CA 94132

Longmore Taught at San Francisco State

Professor Longmore taught history at San Francisco State University for 18 years until his death.  He was also director of the Institute of Disability on campus.

Longmore, who had polio since age 7,  was an early leader and scholar in promoting disability history and the disability rights movement.  His family, friends and colleagues at San Francisco State plan – as part of his ongoing memorial – to continue his pioneering work in Disability Studies.

Unable to use his hands because of a childhood polio, Longmore wrote his first book by punching a keyboard with a pen he held in his mouth – an effort that took him 10 years to complete. 

Longmore, after that book, “The Invention of George Washington” was published in 1988, burned a copy in front of the Federal Building in Los Angeles to protest and bring attention to efforts to reform federal Social Security rules that penalized persons with disabilities who were authors by counting their royalties from their work as earned income.  That policy was subsequently changed and became known as the "Longmore Amendment." 

Longmore spoke in July 2010 just about two weeks before his death, at a San Francisco celebration marking the 20th anniversary of the passage of the federal Americans with Disabilities Act, telling the crowd that "…previously, disability was defined as a set of limitations in the abilities of people with disabilities to function in society because of some pathology in us. The disability rights movement redefined disability as a problem mainly out there in society—not just in our bodies and minds but in society.”

His book Why I Burned My Book and Other Essays on Disability History [cover of book picture above left]  challenged popular views of physician assisted suicide, uncovered previously not widely known history of an early disability protest movement during the Great Depression and looked at the stereotypes of disability found on television and in movies.   He also recalled in the book the protest of to the US Social Security Administration in his 2003 essay "Why I Burned My Book and Other Essays on Disability”

Longmore’s books are available on Amazon.com

Ron Brown (14 of 18)

Brown served previously as president of Sacramento Paratransit Board of Directors. Brown also worked for Sacramento County Human Rights and Fair Housing Commission.  More information in CDCAN REPORT #140-2010: Sacramento disability and civil rights advocate Ron Brown passes away

Bill Powers (15 of 18)

Bill Powers fought so hard and for so long on issues of justice and fairness for everyone – but especially for those who have felt shut out, shouted down or shunted aside in the dreams that belong to all of us in this country. He has never forgotten those that policymakers – and even some other advocacy groups – would like to forget.

From issues of affordable and accessible housing, transportation, to real reforms in health care to needed in-home services and supports, Bill Powers has been there over the years and decades. So many people count Bill as a wonderful friend – as I do too.

More information in CDCAN REPORT #035-2010

Lois Curtis and Elaine Wilson (16 of 18)

Lois Curtis ("L.C.") and Elaine Wilson ("E.W.") were the original plaintiffs in the case which resulted in the "Olmstead Decision."  Curtis and Wilson were the original petitioners in a lawsuit against Tommy Olmstead, the commissioner of the Georgia Department of Human Resources, for failing to place Curtis and Wilson in community-based treatment facilities once treating professionals had determined such appropriate placement.

Elaine Wilson and Lois Curtis (17 of 18)

Governor Arnold Schwarzenegger established the Olmstead Advisory Committee in 2004 to advise California on its compliance of a landmark 1999 United States Supreme Court decision.  The "Olmstead Decision" which requires states to take steps to avoid unnecessary or unjustified institutionalization of people with disabilities, mental health needs, and seniors.  The original lawsuit was filed in 1995 by two women, Lois Curtis and Elaine Wilson, both with developmental and other disabilities from the state of Georgia.

Dr. Richard Koch (18 of 18)

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.