Monday, November 9, 2009

Thoughts on the Future of Autism from the Pennsylvania Commision on the Future of Autism

Health care for all protest outside health ins...Image by Steve Rhodes via Flickr
There is a view of autism as a transitory condition that occurs during youth.

Economic factors such as inequality
racial
there is a thought that value is an important driver.

There is a lack of ownership
there are geographic disparities in Pennsylvania.
Autism and the prison system
legislation for autism Employment
Competition From Other Diseases
Public -- Private Mix Of Treatment Affects Equality
New technologies leap to increase transparency, information, and coordination, and advocacy.
Resources:
diverse networks,
access to shareholders,
ability to embrace diversity
and, knowledge base of treatments, failures, and successes

open space:
dignity and empathy programs in schools,
multimedia and educational programming,
leveraging mobile networks for education and patient support,
public health core -- AmeriCorps,
leadership and professional development.
Small business employing less than 10 people are less likely to offer health insurance. More than 25% of America's sole proprietors don't have guaranteed issue. This is a portability problem.
Need for cost-sharing
drives health care reforms -- caring from outsiders
fragmented data makes it hard to move from one provider
this information above was from COSE by Global Business Network
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Future of Philanthropy

There is a need for infrastructure
pressure for accountability
demand for effectiveness
there is a lot of effort on the grassroots to organize. For example, there is a site called I'm too young for this is a social networking, conference development, peer support, music and art website.
-- -- -- --
Health 2.0:
use of social software to promote collaboration between patients, caregivers, medical professionals and other stakeholders in health
personalized search that looks into the long tail
communities that capture the accumulated knowledge of patients, caregivers and clinicians.
Intelligent tools for content delivery.
Better integration of data with content.
Health care were all constituents focus on health care values and use competition at the medical level over the full lifecycle to improve safety, efficiency, and quality of health care.
Use of Second Life:
Naughty Auties -- for social interaction. However, Second Life can be problematic and trigger various conditions such as epilepsy.
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BAS stakeholders include parents, siblings, self advocates, providers, clinicians, research and development community.
10 key components of the strategic plan:
Adult Autism Waiver,
ACAP,
ASERT Regional Center,
Crisis Response,
Housing,
Employment,
Family Supports,
Services for Adults not Waiver or ACAP,
Fostering Statewide and Grassroots Efforts,
Respond Units: Long-Term Community Support
Training Standards.


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