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).

Holiday Gift Cards for Clients Drive

Dear Friends,

With the season of sharing upon us, I invite you to help us fulfill the wishes of our many clients by purchasing a Gift Card for someone in need. Gift Cards are a great way to share the holiday spirit and empower people with developmental disabilities to make their own purchasing decisions.

Gift Cards must be delivered to The Arc by December 19, so don't delay!

Clients with a Holiday Gift Card Wish
Meet just a few of the clients hoping for a special gift this year, and learn how to purchase Gift Cards that will make their spirits bright.

CLICK HERE TO PURCHASE A GIFT CARD FOR A CLIENT

Shop Online and Support The Arc
Make your online holiday purchases through Ark.com, and 5% of your purchase will be donated to The Arc San Francisco. Choose from over 3,000 popular retailers.

Your Meaningful Donation
Your support brings hope, health and opportunities to all those we serve, and it's so easy to Donate Online. For all you do to make the season brighter for our clients, I thank you and wish you the happiest of holidays.

Sincerely,
Glenn
Dr. Glenn Motola , CEO

P.S. All donations are tax deductible to the full extent allowed. The Arc San Francisco Federal Tax I.D. number is: 94-1415287.

City of San Francisco Honors The Arc

We are pleased to be honored by the City of San Francisco with a Certificate of Honor "...in appreciative public recognition of distinction and merit for outstanding service...on its 60th Anniversary."

Members of The Arc are delighted to be acknowledged by the Board of Supervisors for "...60 years of advocacy on behalf of people with intellectual and developmental disabilities, empowering these San Franciscans to live lives of self-determination, dignity and quality in our community since 1951."

Thank you to Supervisor Jane Kim who sponsored the Certificate of Honor, to all the Supervisors who support us, and to all of you in The Arc's extended family--our clients, parents, staff, advocates and community partners--who have such a huge part in our success.

Dr. Glenn Motola, CEO

Tim Hornbecker, Advocacy and Public Policy Advisor

Arc Angel Breakfast a Success

Over 300 guests attended the 10th Annual Arc Angel Breakfast on October 14th, celebrating our 60th anniversary year in style at the Westin St. Francis Hotel on Union Square.
Keynote speaker Peter Magowan set the tone for the inspiring "We Can Do It!" theme, highlighting the benefits of hiring Arc clients at the two organizations he helmed, Safeway and the San Francisco Giants.
The event raised over $170,000 and garnered 17 new Arc Angels who made multi-year financial pledges to help sustain our employment, health care and independent living services. SEE COMPLETE LIST.
The program also debuted a powerful video featuring clients' personal stories of struggle and achievement. WATCH "WE CAN DO IT!" VIDEO. "I'm so proud of our clients and grateful to our supporters who play a vital role in the success of our mission," said CEO Dr. Glenn Motola. "Together, we can make a difference."
Enjoy our photos and tip your hat to all our event speakers, volunteers and donors who made this 60th anniversary friend- and fund-raiser such a success.
SEE PHOTOS.

(Photo caption)
CEO Dr. Glenn Motola and friends singing
'Happy Birthday!' to The Arc.

Back to School; Back to Bullies

From Disability Scoop
Study: Bullying More Common Among Students with Disabilities
By Michelle Diament

Kids with disabilities and other special health care needs are at increased risk for bullying and generally show less motivation to succeed in school, new research indicates.
The findings come from a study published this week in the journal Pediatrics that looked at more than 1,450 students in fourth through sixth grade attending three rural school districts in Maryland and West Virginia.
Through surveys of the students and their parents, researchers found that about 1 in 3 kids in mainstream classrooms at the schools had some type of special health care need ranging from asthma and attention deficit hyperactivity disorder to emotional and behavioral disorders.
When the survey responses were matched up with school records, it became clear that children with disabilities missed more days of school and had lower grades, according to the research team from the University of Pennsylvania, Johns Hopkins and Marshall University.
These kids also reported higher levels of bullying and were less likely to feel safe in school, the study found.
Moreover, when it came to academics, students with special health care needs were less likely to report that getting good grades mattered to them.
“These problems threaten both their well-being as youth and their future flourishing as adults,” the study authors write. “Health and school professionals will need to work together to identify these children much earlier, ensure that they receive appropriate supports and services and monitor the effectiveness of services.”
Of the students surveyed, boys were twice as likely as girls to have special health care needs. Children from lower income households were also at increased risk for falling into this category, which could explain the high rate of the conditions among students in the study sample.

July 29, 2011

New State of California "Employment First" Policy

To All Advocates:

On July 27, 2011, the State Council on Developmental Disabilities will vote on an “Employment First” Policy for California. That policy will be recommended to the Legislature to become law in California. The Employment First policy has a very good intent – to improve employment outcomes for people with developmental disabilities.

The Arc strongly supports the effort to improve employment outcomes for people with developmental disabilities. And we certainly support our friends at the State Council. But we have a difference of opinion about what is the best wording for an Employment First policy for California. The State Council will vote for this wording to become law in California:

“It is the policy of the State of California that integrated competitive employment is the priority outcome for working age individuals with developmental disabilities. In plain language: WORK IS FOR ALL”.

We object to this wording because, in California, every person with an intellectual and developmental disability has the right, through the IPP, to determine his or her own goals. In California, the State is not supposed to tell people what their “priority outcome” must be. We know there are people who believe that anyone who objects to the proposed wording is just trying to protect the status quo. If the status quo is the IPP, we agree!

We want a strong Employment First policy that improves employment opportunities for people with developmental disabilities, without weakening the right of every individual to determine his or her own goals through the Individual Program Plan (IPP) process.

The Arc of California is urging the State Council to adopt an alternative statement – one that respects the IPP and the individual’s right to choose. We invite you to do the same. Please see the sample below.

Please share your comments with the State Council before they vote on July 27!

Send an e-mail to: council@scdd.ca.gov

Write to: State Council on Developmental Disabilities

1507 21st Street, Suite 210

Sacramento, CA 95811

Be sure to request that all Council members receive a copy of your message.

___________________________________________________

Dear State Council on Developmental Disabilities;

I am writing to express opposition to the draft Employment First policy unless it is amended. Please transmit my comments to all members of the council.

The Arc of San Francisco strongly believes in paid employment and the competitive labor market. The Arc closed its sheltered workshops 8 years ago to promote the inclusion of our clients in paid employment.

But the policy as written subverts the right of people with developmental disabilities to set their developmental goals through the IPP process.

The draft policy does not account for the state’s own actions in continually reducing funding for employment programs that have significantly reduced our capacity to provide the employment and job placement services presumed available by the Employment First policy.

The draft policy does not account for the state’s dismal performance generating new jobs and economic growth, placing people with developmental disabilities at even further disadvantage when pursuing paid employment in a competitive labor market.

The draft policy does not account for the state’s failure to provide a free, appropriate public education for youth with developmental disabilities that adequately prepares students for paid employment when they leave school.

The draft policy does not account for people with developmental disabilities who can afford not to have paid employment, are too sick to have regular paid employment, or wish to pursue higher education through community college or 4-year institution.

The draft Employment First policy will not create any new jobs or new placements in paid employment for clients served by The Arc of San Francisco. The draft policy will subvert choice for people with developmental disabilities in California.

Please vote NO and adopt a policy that respects individual choice and the IPP.

___________________________________________________

Alan S. Fox, M.P.A.

Chief Operating Officer