Monday, December 17, 2012

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.

Monday, July 2, 2012

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

Friday, March 23, 2012

How Can Bruce Get Good Health Care

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

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