CDC: Autism Rate Now 1 in 50 Children

March 20, 2013

The prevalence of autism has increased, researchers say, now affecting 1 in 50 children.

The latest estimate released Wednesday by the U.S. Centers for Disease Control and Prevention comes from a national telephone survey of nearly 100,000 parents conducted in 2011 and 2012.

Parents were asked a number of health questions about their children including whether they had ever been told by a doctor that their child had an autism spectrum disorder. The results suggest that autism is occurring in 2 percent of school-age children.

That’s substantially higher than prevalence numbers the CDC just last March which put the rate of autism at 1 in 88 American children. That previous estimate relied on a study of health and education records collected on 8-year-olds. The current research included children ages 6 to 17, but is considered by some to be less reliable since it is based on parent-reported information.

Federal officials say the increase is largely due to better diagnosis of autism spectrum disorders. The jump in prevalence was most pronounced among older children with milder forms of the condition.

Consistent with previous findings, the survey found that boys were four times more likely than girls to have autism.

The new estimate released Wednesday by the Centers for Disease Control and Prevention would mean at least 1 million children have autism.

The new study has has tremendous significance for the nation’s service and public health systems.

“These statistics represent millions of families across the country that are looking for resources and answers to help their children. But meanwhile, the across-the-board budget cuts in Washington are hampering the vital efforts offederal agencies like the CDC and the National Institutes of Health,which are working to find the underlying causes of autism,and could have real consequences in our society,” said Peter Berns, CEO of The Arc, Washington D.C.

“And these are not the only threats – lifeline programs like Medicaid, Social Security, and Medicare are on the table for real cuts that may impact the ability of these families to get services in the near and distant future for their children, as well as hurting adults with ASD who depend on those programs today. It is not enough to say we want a balanced approach to deficit reduction - we must stand together and say that we cannot simply cut our way out of this situation. We need more revenue to pay for critical investments like prevention and treatment, as well as services and supports for people with autism,” added Berns.

Dr. Glenn Motola, CEO of The Arc San Francisco, said, "This new data underscores the critical need for support services for not only children with autism, and the adults they are becoming."

See CDC's full report online at: http://www.cdc.gov/nchs/data/nhsr/nhsr065.pdf

Courtesy of Shaun Heasley, Disability Scoop and The Arc United States

March is Developmental Disabilities Awareness Month

    March is Developmental Disabilities Awareness month across the United States and we are so proud of the achievements of people with Down syndrome, autism, cerebral palsy and other disabilities. During this month, The Arc San Francisco is making a special effort to educate the public about issues and concerns related to disability.
    Said Dr. Glenn Motola, CEO, “The biggest factor holding people in this population back is a lack of understanding of their abilities. With the right support, people with developmental disabilities are terrific employees, reliable tenants and civic-minded citizens who make valued contributions to our communities—not only as taxpayers but as volunteers.”

    In late March, The Arc San Francisco’s WorkLife Awards celebrate the work and life achievements of people with developmental disabilities and the businesses that champion their success. Find out how you can be a part of this wonderful story of self-determination, self-reliance and achievement as a sponsor, a donor or a volunteer.
    For more information, contact Terry Goodwin, Employment Services Director, at (415) 255-7200 x148 or tgoodwin@thearcsf.org.

Fiscal Cliff Averted: I/DD Community Says New Battle Awaits

    The New Year's Day deal averting the "fiscal cliff" lays the groundwork for more painful struggles in Washington over taxes, spending and debt in the next few months.
     While the newly passed legislation does not include any cuts in benefits for the entitlement programs, this issue is expected to take center stage in the coming weeks as it becomes a bargaining chip in the upcoming debt ceiling negotiations. In the first three months of 2013, additional legislation will be necessary to address other aspects of the nation’s fiscal situation, including an increase in the debt ceiling, the end of the 2-month extension of the sequester (automatic cuts), and appropriations for the remainder of Fiscal Year 2013.
     These deadlines will set the stage for additional negotiations between the Congress and the White House. There will be mounting pressure to generate additional revenue and to cut the entitlement programs (Social Security, Medicaid, and Medicare) as well as the discretionary programs (such as housing, education, employment) that people with intellectual and developmental disabilities (I/DD) rely on to live in the community. The Arc will remain actively involved in seeking a balanced approach to deficit reduction by advocating for increased revenue and protecting critical spending programs for our constituents.
     Learn more about the fiscal cliff deal at The Arc’s Center on Budget and Policy Priorities website http://www.cbpp.org/ and view statement on the Arc US blog.
(Courtesy of The Arc United States, 1/3/2013)

Thoughts and Prayers to Newtown, CT

The Arc San Francisco sends our thoughts and prayers to the community of Newtown, Connecticut as they--and all of us--try to cope with the terrible tragedy that has befallen the victims, families and residents.

The Arc Lauds Supreme Court Decision, but 'More to be Done'

The Arc Reacts to the U.S. Supreme Court’s Decision on the Affordable Care Act

The Arc released the following statement in response to the U.S. Supreme Court’s decision to uphold the Affordable Care Act.
“People with intellectual and developmental disabilities have been waiting for generations for the insurance reforms put in place by the Affordable Care Act. Today’s ruling removes any doubts that the law Congress enacted should stand and will benefit millions of people with and without disabilities. It ends discriminatory insurance practices and makes health coverage more affordable and accessible – important protections which too many people with disabilities have been deprived of for too long. “But the ruling is not perfect for people with I/DD. The Arc is concerned that disallowing the federal government the ability to withhold Medicaid dollars from states that don’t expand their program to cover more of the uninsured might mean that people with I/DD who would have benefitted from the expansion could be left behind. Medicaid is an incredibly important lifeline for people with I/DD, providing health care and long term services and supports. “We will carefully watch how states react to this development and encourage our advocates across the country to put pressure on their state leaders to do the right thing and expand their Medicaid program,” said Marty Ford, Director of Public Policy for The Arc. The Arc advocates for and serves people with I/DD, including Down syndrome, autism, Fetal Alcohol Spectrum Disorders, cerebral palsy and other diagnoses. The Arc has a network of over 700 chapters across the country promoting and protecting the human rights of people with I/DD and actively supporting their full inclusion and participation in the community throughout their lifetimes and without regard to diagnosis.

Editor’s Note: The Arc is not an acronym; always refer to us as The Arc, not The ARC and never ARC. The Arc should be considered as a title or a phrase.

Contact: Meredith Manning, The Arc San Francisco, (415) 255-7200 or mmanning@thearcsf.org

How Can Bruce Get Good Health Care

Health Care Reform for Transition Age Youth and
Adults with Developmental Disabilities (CA)
UCSF

Bruce is a 30-year old man with autism with a mental age of 2 years old. He is six
foot tall, 260 pounds and terrified of needles. Now he has diabetes. What would i
take for Bruce to get good medical care?

Vision. Transition age youth and adults with developmental disabilities (DD) have access
to health services that maximize their wellness and function. Health care for transition age
youth and adults with DD is interdisciplinary team‐based care with patients and caregivers
at the center of the team.

Definition. Developmental disabilities (DD):

�� originate before age 18

�� are expected to continue indefinitely

�� constitute significant functional limitations in at least three or more areas such as capacity for self‐care, learning, language and mobility

�� include autism, cerebral palsy, epilepsy and intellectual disability

In addition to their disability, most people with developmental disabilities have chronic medical conditions and approximately 30% have associated mental illness.

The Challenges. The longevity of people with DD now approaches that of the general population. Resources provided within the State of California’s integrated systems of care for children with DD are relatively more robust and better funded than transition age youth and adult systems.

When transition age youth with DD reach adulthood, experienced physicians and other trained health care providers are typically no longer part of the picture. Health care needs continue beyond childhood, but the mandate for a wraparound, comprehensive support system does not.

Resources for adults are insufficient and poorly integrated. There is a lack of:
�� Certified medical experts for patients with DD

�� Special medical services

�� Support for clinical and health services research

�� Training programs for medical personnel and caregivers who manage complex medical and behavioral conditions.

�� Reimbursement for the extra time involved in care coordination, prevention and treatment.

�� Physicians who accept the low reimbursements for patients dependent on public health insurance.

Lack of parent support.
Unlike their younger counterparts, this population lacks parent support.

�� An estimated 30,000‐77,000 people with DD in California are currently living with caregivers over age 60. As parents age along with their children, eventually, they can no longer provide advocacy and care.

�� Many adults with DD have no family advocates or caregivers.

�� This lack of support is an issue because health problems generally become more complex as people with developmental disabilities age.

Policy gaps.
Since the 1970’s, many thousands of adults with disabilities have moved from institutions into the community. However, current policy and funding are not sufficient to protect them from neglect, much less to provide them with health care. Without appropriate oversight and comprehensive services, adults easily fall through the cracks.

The most important policy gaps include pragmatic approaches to:

�� Maintaining, organizing and facilitating access to confidential information

�� Obtaining informed consent

�� Enabling the use of brief medical stabilization for procedures

�� Providing independent advocacy

�� Clarity on which agency is responsible for developing and funding behavioral services

The Solutions. About two years ago, a group of stakeholders convened to plan a pilot for a model of health care reform. Remarkable progress has been made in developing new funding, partnerships, and in expanding dialogue to include state and national leaders, researchers, and clinicians. The leadership includes:

�� The Arc of San Francisco

�� Faculty from the University of California, San Francisco

�� Golden Gate Regional Center

�� Health Plan of San Mateo/San Mateo County Medical Center

�� San Francisco Department of Public Health

�� University of the Pacific School of Dentistry

The CART Model. The long‐term strategic plan begins with building an academic unit within the Department of Family and Community Medicine at UCSF to provide clinical leadership and establish working relationships between the medical and developmental service providers. The Arc of San Francisco will lead an advocacy and policy campaign to develop resources for reform and will deliver health advocacy services. Health Plan of San Mateo is leading an effort to develop a multidisciplinary clinic. These projects will form a first‐in‐the‐country pilot to serve an entire community. A goal of the project is to evolve into a UCSF Center for Excellence in Developmental Medicine to support the CART Model:

�� Clinical services in university and community settings

�� Advocacy to influence policy

�� Research programs in health services and education to rigorously study the cost effectiveness of our clinical and training innovations

�� Training and technical assistance for medical professionals and caregivers



http://developmentalmedicine.ucsf.edu/odpc/docs/pdf/policy/Policy_CA.pdf

A Look at Health and Developmental Disability

Keeping developmentally disabled adults healthy: Q & A with The Arc San Francisco’s Alan Fox
-Laura Shumaker, Writer & Autism Advocate, SF Gate

My son Matthew, who is 25 and on the autism spectrum, is the most stoic person I know–so much so that by the time the time tells me he is not feeling well, he’s already really, really sick. Since a recent illness and hospitalization (from which he has recovered, thankfully) I’ve learned of the importance of monitoring the health of adults with developmental disabilities, and teaching them to advocate for themselves.
The topic is a professional and personal passion for Alan Fox, the Chief Operating Officer for The Arc San Francisco, a non-profit service and advocacy organization for adults with autism, Down syndrome, cerebral palsy, intellectual and developmental disabilities and their families living in San Francisco and San Mateo counties. Alan is also the parent of a young son with autism.
Alan has a unique perspective on the state of services for people with autism, both as a leader in an organization that provides services, and as someone who must find them for his son. He oversees a number of programs at The Arc, including independent living support services, employment placement, and ArtRearch, an innovative program that teaches adults with developmental disabilities to be professional artists. He also oversees support and outreach activities to families of loved ones with developmental disabilities.
Alan will talk about his health advocacy work for adult with developmental disabilities at UCSF’s 11th Annual Developmental Disabilities Conference March 8 and 9. This is a conference that I recommend highly to both parents and professionals as it provides an invaluable opportunity for dialogue among experts and families in the care and future of individuals with disabilities.
Q) My son Matthew doesn’t like to tell people when he isn’t feeling well, and by the time his caregivers figure it out, he is really sick! How does The Arc of San Francisco monitor the health of its clients?
A) My son too hardly ever complains of feeling ill and never calls attention to injuries which occurred outside my personal observation. Parents are usually adept at sensing when their child is in pain but a low-grade fever or headache is harder to figure out. When your child has a lot of idiosyncratic behaviors to begin with, an odd behavior that could indicate not feeling well may be hard for even the most attentive parent to discern as unusual.
My wife and I have to play close attention to signals of distress and I visually examine my son for wounds daily. He will hardly ever alert us to an injury. When he does have a wound, we have to carefully monitor it as it heals, because Joe tends to pick off scabs and re-open healed wounds. Some wounds he got when he was a child took months to heal and have left many visible scars. I have often heard that some people with autism are hyposensitive to pain, and while this idea may have some scientific merit, I think it is pernicious because it tends to minimize the urgency of potential health concerns and should be challenged whenever it is raised. For example, I try to over-medicate. That is, on the theory that people with developmental disabilities tend to be under-medicated, at any sign of illness or elevated temperature, I am a lot quicker to dispense the children’s acetaminophen to him than to my neurotypical child.
The Arc monitors the health of adults with developmental disabilities in a few ways. At our Seniors center where we serve elders, The Arc employs an on-site RN who performs basic health surveillance. She has worked in geriatrics for many years and through her knowledge and experience with our clients, is able to provide regular screening and earlier response that prevents many health problems from worsening.
Clients enrolled in our Health Advocacy service are assigned to a single Health Advocate who coordinates that client’s health care. The Health Advocate not only provides case history and diagnostic information to the doctor, but also can provide in-the-moment technical assistance to the client’s clinical care team, who are not likely to have a good command of the health impacts of developmental disability. Health Advocates partner with the clinical care team to ensure that the client complies with medical orders after the visit is over. All Arc staff are certified in first aid and CPR, but our residential services staff become more involved in client health care than other staff. A key idea we teach to our staff is that your gut is a good indicator, so if you think something is wrong with your client, then something probably is wrong.
Q) When my son was in the hospital recently, it was clear that few knew how to communicate with him. How do your clients seek medical care? With caregivers? On their own?
A) That must have been pretty scary for him and for you.
It really depends on the client’s level of development, their ability to express themselves, and whether they have family members in their lives. Communication can be difficult for a lot of
people we serve at The Arc and medical issues can make communications harder or even impossible. If family members are present, they likely have a case history available and also ability to communicate with the person. The Arc always seeks to engage family members in a person’s health care team. Often, it is family members who are the first Health Advocates and the ones who will seek medical care for our client.
For clients who do not have family members, The Arc staff often act in loco parentis. We prefer that this be done in accordance with an advanced health directive and encourage people we serve to complete one as a matter of course. Medical care is sought also at times by staff of board-and-care homes where many people with developmental disabilities reside after they no longer live with family members. People we serve will commonly present to their Arc staff problems they need help solving, and this includes problems with their health.
But your question also speaks to the larger issue of access to health care. I imagine most of your readers would be shocked to learn how difficult it is for those who depend on public health insurance to see a doctor. After all, the public is spending itself into poverty on health benefits, isn’t it? Dentistry, podiatry, and other critical services are simply not offered to people who are dependent on public health benefits, including most adults with developmental disabilities. Even when these services were available, they were limited. Medi-Cal would not pay for preventive dental care, but would pay for tooth extraction! Anyone who cares can look in the mouths of the people we serve, and see the dental caries, the inability to chew nutritious food, and the results of years of lack of preventive care. The lack of access to health care by operation of the insurance system is only aggravated by the lack of clinicians who are trained, qualified, and who feel competent to treat people with developmental disabilities as patients.
Q) Many of your clients have aging parents who are overwhelmed by the needs of their adult children. Your thoughts on this problem?
A) This is a big problem and it will only become bigger. For years, we have told parents it was wrong to institutionalize their children with developmental disabilities, we want their children to live with us, as a community. But we have not kept our promise to ensure that the services that were formerly available in institutions would be provided more cheaply, and more appropriately, in the community. Now we are approaching a generational inflection point where devoted parents who have largely shouldered the cost and the work themselves will no longer be able to depend on the ever more meager help provided by underfunded charities like The Arc. If you have a child with a developmental disability, the time to begin planning transition to adulthood should begin by age 16. That gives just about 6 years to make a good plan for what adult life should look like. At The Arc, we have received phone calls from anxious parents on the Friday their child graduated from high school, asking us where they should go on Monday! Parents who have not planned will put their child in an otherwise avoidable predicament.
In my experience, it is relatively rare that parents choose to keep their adult child at home; it is more often the result of a lack of choices. We love Joe unconditionally, but I do not want my child to live with me and my wife as we age! I want him to be independent, happy, and to live in the community like people without developmental disabilities do. I want him to have whatever help he needs to do this. My wife and I know we will never be able to make that happen on our own and we question whether the commitments made to parents like us by the State of California in its laws really have any meaning anymore. We understand life is not fair, but that our leaders are failing us is clear, and unfair.
The one piece of advice I would offer regarding health care is to be sure to find an adult practitioner when your child reaches maturity. While developmental pediatrics is a very well developed medical specialty, there are too few adult practitioners who are trained, qualified, and feel competent to serve older youth and adults with developmental disabilities. Parents need to create more demand for this field and need to ensure their adult child is no longer being treated on a pediatric panel.
Q) It’s almost flu season! Does The Arc encourage its clients to get flu shots?
A) Absolutely! We always emphasize preventive health care and flu shots are an effective prevention method. They are highly indicated for people with developmental disabilities (and their staff) because they often have co-occurring issues or prescriptions which compromise their immune systems and ability to fight infection. The Arc trains its staff on health and safety issues at least every quarter. We have trained staff on how to cough and sneeze safely, how to wash their hands properly, earthquake safety, injury prevention, and other health issues. Our safety committee meets quarterly and reviews worker’s compensation claims and injury reports, develops correction action plans, drills on evacuation, and maintains our emergency procedures. All staff carry client emergency cards with them when in the community and also carry first aid kits.
Q) How healthy are your clients overall?
A) We survey Arc clients annually on their health and they report themselves as being fairly healthy. In 2011, 71% percent said they feel healthy “most of the time.” About the same percentage report it is “easy” to see a doctor or get medicine overall.
In relating to your question above about aging family members, 42% of clients who live with family members say their family members are sick “half the time” or more.
However, The Arc also tracks incidents where clients have a medical emergency, injury, or illness leading to emergency medical response or hospitalization. This measure has significantly increased in the last few years reflecting both the increasing age and fragile health of people with developmental disabilities. In the year ended Jun. 30, 2011, reportable medical incidents increased 79% compared to the year ended Jun. 30, 2010. In the quarter ended Sep. 30, 2011, medical incidents increased 300% compared to the quarter ended Sep. 30, 2010. Medical incidents have been the largest category of reportable incidents for 4 consecutive years.
The sad fact is although the state collects reams of data about people with developmental disabilities, no one really knows how sick or how healthy Californians are with developmental disabilities.
Q) Does The Arc have counseling for nutrition/exercise/wellness?
A) Everyone knows that eating right and exercise are the foundations of good health, but these remain a challenge for most people with developmental disabilities. Many people take medication that affects their appetite, ability to eat, and metabolize food. As mentioned above, poor dental care can lead to poor digestion because the teeth cannot fully perform their digestive function. Diabetes is fairly pervasive as is obesity. Most people we serve at The Arc can afford to buy good food but need help to shop and cook. Sometimes our clients make poor choices about eating and do not take advice about how to lose weight. The people we serve generally cannot afford to go to a gym or buy equipment so their choices for exercise are limited, especially if they need support or encouragement to exercise.
We have found group exercise to have enormous benefits and offer fitness classes to our clients, including clients with ambulation and mobility disabilities. Twice a week a fitness instructor comes on site and does classes so that everyone, with a diversity of fitness levels and abilities, has a chance to get exercise.
The Arc also has a working kitchen where every day our staff teach clients how to shop, plan and prepare meals. Being able to take care of nutritional needs isn’t just about good health. Being able to prepare one’s own food is a critical skill for living independently in the community.
Q) What is the biggest health problem your clients face?
A) Wow, this is a tough choice. I would say the biggest health problem is our clients’ own inability to fully function as partners in the way the U.S. health care system seems to expect of patients. Too much is left to patients to do on their own, for example; maintaining case histories, coordinating specialty care, and complying with treatment plans. Think how hard this may be for you to do for your own health and then consider how hard it would be to do for someone else, let alone someone who may not be able to communicate with you. The Arc and its partners have proposed a reform model that we think would make the system work a lot better for people with developmental disabilities, but so far, we are still working to generate policymaker interest in it

Alan Fox, The Arc San Francisco COO is the 2012 recipient of the Shriver Award from UCSF in recognition of his efforts, with UCSF and many other community partners, to reform the health care system to provide better access and care for individuals with developmental disabilities

Learn more about The Arc San Francisco HERE.
More about Laura Shumaker at http://www.laurashumaker.com/

Hear more of Alan’s conversation about The Arc’s Health Advocacy Program by registering for the UCSF Developmental Disability Conference HERE.
The conference is presented by the UCSF School of Medicine and the UCSF School of Nursing, and is open to family members and caregivers of individuals with developmental disabilities.
A generous grant from the Special Hope Foundation, a nonprofit 501(c ) 3 organization, made this year’s meeting possible, (and last years as well).