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VOR Speaks Out About National Crisis: A Lack of Choice, Quality and True Person-Centered Care For The Disabled

Kim  Speaking Austin ChariManaging Editor's Note: I'd love to meet AofA readers at the VOR National Conference dinner on Sunday, June 8 at the beautiful Hyatt Regency in Washginton DC.  I have the great pleasure of being the dinner speaker. The event spans several days, includes panels, speakers and a chance to engage in Congressional advocacy during the week.  Imagine face to face meetings with your Congressional leaders to tell them what YOUR CHILD will need for a safe and meaningful future - as opposed to what neurodiversity advocates and national agencies who smell M-O-N-E-Y in our kids want.  Learn more and register HERE. Kim

Elk Grove Village, IL

Across the country, tens of thousands of individuals with developmental disabilities, including autism, are suffering due to lack of access to appropriate care and services.

The numbers representing present and future need are alarming.  Almost all states have waitlists VOR logo sidebar for accessing adult support services, with more than 280,000 individuals with developmental disabilities, including autism, going without necessary care in 2013.  Almost one million individuals with developmental disabilities, including autism, are still living with caregivers over the age of 60.  In the next decade, over 800,000 on the autism spectrum will transition to adulthood.

So where do we go from here?

For 30 years, VOR,  a national nonprofit organization, has advocated for high quality care and human rights for people with intellectual and developmental disabilities.  VOR is the only national organization calling into question the impact of decades-long state and federal deinstitutionalization that continues in earnest, especially in light of current unmet needs already in the community.

“Individuals with profound intellectual and developmental disabilities or autism have significant care needs,” Julie Huso, Executive Director commented. “The impact of going without adequate care is felt equally by the individuals and their family caregivers.”

In 2013, there were 280,000 people with developmental disabilities, including autism, who were waiting for services.  VOR has carried these concerns to all levels of government, including the White House and Congress, and has recently joined forces with a group calling itself the Coalition of Community Choice, a national grassroots collaboration of persons with disabilities, their families and friends, disability rights advocates, professionals, educators, and housing and services providers to advance the principle that community can be experienced in all residential settings.  VOR believes that true community is a concept not limited to any particular residential settings.

“We feel strongly that people with autism and/or developmental disabilities have the right to choose where they receive services, with the help of their family members and legal guardians as appropriate,” says Huso. “Unfortunately, prevailing public policy has taken the ‘person’ out of person-centered planning favoring instead an approach that attempts to push everyone into small residences without any regard to individual need or choice.”

VOR believes by serving people according to individual needs and choices it is more assured that they enjoy greater happiness and a higher quality life experience – whether in a family home, small home or specialized facility setting. The needs are diverse - one size does not fit all.

“‘Inclusion’ has become more about pushing people with profound needs out of specialized care or denying access (deinstitutionalization), rather than focusing on meeting unmet human needs,” said Huso. “As a result, vulnerable people are truly suffering and are far more isolated in unprepared settings.”


About VOR:

VOR is a national organization that advocates for high quality care and human rights for people with intellectual and developmental disabilities. Offering community, legal, medical and educational resources for families of individuals with special needs, VOR is committed to providing help for people with disabilities. Standing up for long term care facilities and community disability programs, VOR is dedicated to maintaining individual and family choice for people with intellectual and developmental disabilities.  For more information about VOR, please visit us at www.vor.net, or contact VOR directly at 977-399-1624 or info@vor.net. VOR’s Press Kit .

For more information about the Coalition for Community Choice, visit the new Autism Housing Network website.




Chantal Sicile-Kira

The important thing to remember is CHOICE and ACCESS. Some people like Jeremy want to stay in their own neighborhoods and have supported living option with a neurotypical roommate and trained staff.
He doesn't want to be in a group home (as a result of being sexually abused in a setting for autistic -only children and teens - he doesn't want to be in a group of disabled people).

Please realize that just because you group people together doesn't make them 'safe'. There is no guarantee of safety in any situation.

We need to make sure CHOICE is what is being pushed, not one type of housing over another.

Thanks for listening :-).


Cannot wait to join you Kim! Thank you for speaking! Collecting stories!


Thank you again for your efforts Kim.

Do we need to inform our members of Congress of the event?
or have they been notified ?

At present, there are enough Autistic children to fill a major University ...in each and every State... for the next 50 years, that is if the numbers stop increasing.

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