Protect Olmstead Report Language

Deinstitutionalization – The Committee notes the nationwide trend toward deinstitutionalization of patients with intellectual or developmental disabilities in favor of community-based settings.  The committee also notes that in Olmstead v. L.C. (1999), a majority of the Supreme Court held that the Americans with Disabilities Act does not condone or require removing individuals from institutional settings when they are unable to handle or benefit from a community-based setting, and that Federal law does not require the imposition of community-based treatment on patients who do not desire it.  The committee strongly urges the Department to factor the needs and desires of patients, their families, and caregivers, and the importance of affording patients the proper setting for their care, into its enforcement of the Americans with Disabilities Act.”

Although this language simply requires the Department of Justice to adhere to Olmstead when enforcing Olmstead, some federally-funded organizations that favor serving everyone in community settings without regard to individual choice and need, have somehow found this report language threatening and are now urging the Senate to reject it when it takes up the Senate Commerce, Justice and Science, and Related Agencies Appropriations bill as early as this coming Monday.”

Your letters and support are needed NOW to inform your Senators of this issue.  It is very simple – just follow this link:

VOR – Protect Olmstead Report Language

 

Please take action before it is too late!

THANK YOU!

 

Text above taken from the VOR website

White House Petition regarding Olmstead

We must work together across this great country to protect our most vulnerable citizens.  This petition, started by the Murray Parents Association in Illinois, is part of the plan to stop the injustice that is spreading.  Please sign and circulate.

Link to We the People – Your Voice in our Government – Petition to The White House

 

www.MurrayParentsAssociation.com  ( From Laurie Stengler)

I have submitted a petition to the White House to request enforcement of Olmstead to include the right of the disabled to choose institutional over community based living. We have until 12/20/2012 to accumulate 25,000 signatures. After reaching this threshold the White House agrees to review the information and send a response to all signing the petition. I am really hoping we can a strong show of support for this and any help you can provide is much appreciated.

Please consider signing the petition and forwarding this information to others. We need to let the Obama administration know that enforcement of this decision has gone too far compelling states to close vital centers and putting the most severely disabled at risk for abuse and neglect.

 

Thank you – please forward to people so we can gather signatures!

VOR slams Department of Justice for Dangerous Decision

What is VOR?

 

VOR is the only national organization which advocates to protect the rights of individuals who cannot speak for themselves. VOR, a nonprofit 501(c)(3) has been advocating for over 25 years in support of family decision-making rights and continuum of care options for people with developmental or intellectual disabilities., including their own home, family home, community based options and facility-based care.

 

VOR is the only national advocacy organization that expressly opposes efforts to eliminate the facility option while also supporting expansion of quality community programs. VOR advocates that the final determination of what is appropriate depends on the unique abilities, needs and desires of each individual, with the input of family and guardians where necessary and appropriate.

 

VOR really cares about the individual and is not bound by ideology which limits choice, person-centered planning or self-advocacy.

 

VOR has the voice that we need to hear more of – Please support VOR and their work.

Please see this link for Department of Justice Decision to learn about this most dangerous settlement

http://www.vor.net/news/25/260-vor-slams-justice-department-plan-to-close-virginia-centers-for-disabled

 

Thomas is in VOR National News

Thomas has made national news reporting –

 He was featured in the VOR weekly update.

The Face of VOR

4. Thomas’ Story ——————————————- By Cheryl Felak, RN, BSN * Seattle, Washington * Dec. 31, 2011

Related Audio: From Crisis to Stabilization – Thomas’ Story  

   Thomas is my son. He’ll be 18 years old in February 2012. He has an extremely rare genetic disorder which is neurodegenerative and has early onset dementia. Throughout his youth, he has had many prolonged hospitalizations in the inpatient psychiatric unit at a children’s hospital.  Due to his developmental disabilities, they really didn’t know what to do with him.  They didn’t know about personal care. When he was 14 years old, he came home from one hospitalization with such extreme skin breakdown that it took about 5 months to clear up.  Even with a 1:1 aide in the hospital setting, they were not able to provide for his personal care adequately.  I would often arrive to see him with food on his face, food down the front of his shirt, teeth not brushed or a diaper that needed to be changed.  In the hospitals the staff are not trained to care for DD patients and particularly on the psychiatric floors where children who are dually diagnosed (mental illness/developmental disability) tend to be hospitalized.

    Thomas now lives at Fircrest, the Residential Habilitation Center (RHC) (a state ICF/MR and specialized DD Nursing Facility) near our home.  It has been a Godsend, although he was denied admission for about a year. The State’s Department of Developmental Disabilities (DDD) claimed that there were no resources for him (even though he was on a Home and Community Based Services (HCBS) waiver). Before his admission to Fircrest, DDD suggested that for the next crisis we would just have to call the police. 

   Since moving to Fircrest, he has not had to be hospitalized once and has been stable. He is so happy in his home. It has also allowed our family to regroup since our family disintegrated and my health also became life threatening in efforts to manage Thomas at home.  We have also had to file for bankruptcy.  Moving him to the RHC has enabled us to work and become productive members of our community and also be advocates for other families who are in the shoes we were in and are in.

   When Thomas was 14 years old and living at home, I recorded him during a typical manic/psychotic episode – typical for Thomas; typical for others dealing with this. During such episodes, everything becomes intense and all-consuming for the caregiver to maintain the health and safety of the child. During the episode I taped I was trying to get Thomas to go to the bathroom prior to leaving for the day camp, which he really loves. You’ll hear screaming, disorganized thought patterns, and Thomas hitting and biting himself during this taping.  I hope this audio helps people (citizens, advocates, legislators and policymakers) to hear what life is like for many of us when our child is home.

   The audio was also in response to a question by the Executive Director of an Arc chapter who asked me, “If RHCs are so great, why we don’t see people in Olympia testifying how much they LOVE living there?”

   This comment alone tells me that The Arc advocates do not understand the issue of the ICF/MR residents at all. Many of our residents are mostly non-verbal, may not tolerate the trip to Olympia, may not tolerate crowds, may not be able to maintain appropriate behavior skills for very long or may be too medically fragile to travel.

  Thomas has taught me a lot in our journey together. I’m motivated to maintain the good, compassionate home he now has at Fircrest.. I’m motivated to help others.  I founded “Because We Care – Beyond Inclusion” as one way to help.