VOR

09/09/2024

Good things going on at sheltered workshops across the country.

07/09/2024

https://newsadvance.com/news/local/amherst-mother-lobbies-state-to-find-suitable-location-for-son-with-medical-needs/article_838e2c38-6678-11ef-becf-bb60cf80cd55.html

Just more than seven and a half years after her twin sons were relocated from the former Central Virginia Training Center in Amherst County to the Hiram W. Davis Medical Center in Petersburg, Martha Bryant is praying for a state facility that will meet her surviving son’s medical needs. "I'm prayi...

06/09/2024

It is with great sadness that we share that our Treasurer, Larry Innis, passed away last week. Larry died peacefully on August 30, 2024 with family by his side in Bethalto, Illinois, his home town.

After earning an MBA from the University of Missouri, Larry volunteered in the office of Ohio Congresswoman Marcy Kaptur. His love of sailing and government led him to work as a staffer for the Coast Guard Subcommittee on Merchant Marine and Fisheries. He subsequently established his own company, Innis Associates, which provided legislative consulting in the boating industry. He established the Washington D.C. office for Marine Retailers Association of the Americas and worked for them until his retirement. He played a leading role in the creation of the Marina Operators Association and the Environmental Education Foundation. He successfully lobbied for the Clean Water Act and for safe boating legislation.

Larry came to VOR as a federal legislative liaison, working on Capitol Hill with Peter Kinzler and Tamie Hopp. After he retired from that position, he joined our Board of Directors, and served as Treasurer from late 2015 until his death last month. Larry’s dedication to VOR was outstanding, and he was the only member of our board who did not have a family member with and intellectual or developmental disability or autism or had worked in providing for their care.

Larry had a gift. His powers of persuasion came from a soft voice and a cheerful disposition. He spoke softly, but with both warmth and conviction. People listened.

Larry lived for many years in Annapolis, Maryland, where he enjoyed sailing his Hinckley sailboat on the Chesapeake Bay and driving classic sports cars. He was an active member of the First Presbyterian Church of Annapolis and was a supporter of the Annapolis Symphony Orchestra and the Chesapeake Youth Symphony. He was a collector of nautical antiques and a lover of history.

Larry is survived by his beloved son, Drew. He also leaves behind many dear friends. Larry will always be remembered as a part of VOR’s history, and one of its truest friends.

If you would like to make a donation to VOR in Larry’s memory, please click here.
https://interland3.donorperfect.net/weblink/WebLink.aspx?name=E140301&id=4

Please visit Larry’s legacy page to sign his guest book and post a fond memory.
https://www.legacy.com/us/obituaries/thetelegraph/name/larry-innis-obituary?id=56205951

05/09/2024

SEPTEMBER IS MEMBERSHIP MONTH



VOR is a non-profit organization, advocating for the families of individuals with intellectual and developmental disabilities and autism. We rely on our members for support, and to help spread our message that families deserve CHOICE
from a full range of high quality residential services
and employment opportunities.

During September, we ask our supporters to reach out to friends, family, and members of their ICF family groups or sheltered workshops to bring new members into the fold.

Just think.

If every member were to bring in one new member.....
there's no telling what we could achieve...............
Please click here to join, renew, or give a gift membership to VOR
https://www.vor.net/get-involved/donate-to-vor

Please click here to download a letter about VOR that you may share with your family groups
https://www.vor.net/item/vor-letter-to-icf-family-groups

VOR - A Voice of Reason is a national organization that advocates for quality residential options for people with intellectual disabilities.

04/09/2024

Before you draw a conclusion to the title of this blog, hang with me until the end. For those of you new here, Jude, our autistic 15 year old son became violent at the age of three and nearly impos…

04/09/2024

https://www.washingtonpost.com/politics/2024/08/30/subminimum-wage-labor-department-politics-disabled-workers/

A rule the Biden administration is considering could ignite a war over the future of the decades-old 14(c) subminimum wage law, which allows certain employers to pay disabled workers far less than minimum wage.

02/09/2024

A perfect post for Labor Day!

Celebrated in September, Direct Support Professional (DSP) Appreciation Month is a time to recognize and honor the invaluable contributions of DSPs and home care providers. These dedicated individuals provide home-

02/09/2024

A special thanks to all those who care for our special loved ones each and every day!

30/08/2024

Such good things going on at our ICFs across the country.

28/08/2024

An autistic child. The struggle for services. The 911 calls. This is the harrowing story of how one mom scrambled to get help for her son and keep her head above water.

27/08/2024

https://www.desmoinesregister.com/story/news/2024/08/21/glenwood-ex-medical-director-charged-with-professional-incompetency/74891688007/

The Iowa Board of Medicine has charged Dr. Mohammad Rehman, former medical director at the since-closed Glenwood Resource Center, with incompetency.

27/08/2024

Upcoming Meetings of

The President's Committee for People with Intellectual Disabilities (PCPID)

September 26, 2024 9am - 4 pm Eastern

September 27, 2024 9 am - 3 pm Eastern

The President's Committee for People with Intellectual Disabilities (PCPID) will host a meeting for its members to discuss the 2024 PCPID Report. The meetings will be held in-person in Washington, D.C. and on Zoom. All PCPID meetings, in any format, are open to the public. Members of the public can join in person or virtually. This meeting will be conducted in presentation and discussion format. The PCPID is overseen by members of the Administration for Community Living (ACL), and all meetings are facilitated by the ACL.

This year's report will focus on Home and Community Based Services (HCBS) and discuss emerging issues facing people with intellectual disabilities who receive services through the HCBS channel of Medicaid.

Once again, people with I/DD or severe autism who require ICF services or choose to work in 14(c) programs will not be included in the findings and recommendations of this committee.

We urge our members to sign up for the virtual meetings and make your presence known. Remember:

"If you don't have a seat at the table, you are probably on the menu."

Click here to register and to leave your comments.

The President's Committee for People with Intellectual Disabilities (PCPID) will host a meeting for its members to discuss the 2024 PCPID Report focused on Home and Community Based Services (HCBS) and discuss emerging issues facing people with intellectual disabilities. All the PCPID meetings, in...

25/08/2024

https://www.disabilityscoop.com/2024/08/23/tim-walzs-son-gus-brings-disabilities-to-national-stage/31021/

Tim Walz didn't mention the word disability once while accepting the Democratic vice presidential nomination this week, but it was his son Gus, who has disabilities, who stole the show.

23/08/2024

Let me vent for a minute.

True ableism isn’t in sharing the struggles tied to autism; it’s in pretending those struggles don’t exist.

Why the need to argue that a disabled person is only disabled because of society?

Even in the most perfect world, Charlie would still swallow screws, still be unable to communicate pain, still run into danger, still not know how to hold a pencil or spell his name.

Why insist that a child with an intellectual disability and Level 3 autism, who is cognitively at a pre-K level, being in a mixed-age classroom is the same as being in 6th grade?

Ask yourself: does the reality of disability make you uncomfortable?

Being intellectually disabled doesn’t make a person less. Having Level 3 autism doesn’t make a person less.

Unless you’re raising a middle schooler with the cognitive skills of a toddler, no sense of danger, and who requires 24/7 support just to stay safe, you have no right to shame other parents for their feelings.

Actually, even if you are, you still have no right to shame other parents because their reality and their feelings are different from yours.

Feeling the full spectrum of emotions that come with raising a child with profound autism and other comorbid conditions is not just okay; it’s necessary.

Love and pain coexist, and so can sadness and happiness. Ironically, autism has taught me that emotions are messy, complex, and not easily defined. It’s not all black and white.

Feeling sad about your child’s struggles isn’t incompatible with loving them with every fiber of your being.

What truly matters is loving your children unconditionally through every win and struggle.

And that, I can do.

22/08/2024

What fun at this Congregate Care Center.......train rides by Little Obie, CN Train.

20/08/2024

https://www.hollywoodreporter.com/news/general-news/colin-farrell-son-james-angelman-syndrome-new-foundation-1235971089/

The actor is also launching the Colin Farrell Foundation, which will provide support for adult children who have intellectual disabilities through advocacy, education and innovative programs

17/08/2024

VOTING & You,

Voting & Your Loved Ones

VOR is a national non-profit, 501(c)(3) organization and endorses no party in the upcoming elections. We have members on both sides of the aisle, and many of our members fall somewhere outside of their party's platforms - agreeing on some issues while finding themselves at odds with their party's platform on others.

Our goal is not to tell you who to vote for, or against, but to encourage you to participate in this election.

We hope that our families will look carefully at the issues, the parties' platforms, and read from a wide range of news sources to determine for themselves which issues matter to them and which candidates best represent their views.

But what about our loved ones with I/DD and autism? Some of them do have the capacity to vote for the issues important to them. Others may not. We aren't sure what qualifies one person with ID/A or disqualifies another. There are no guidelines here, so it appears to be up to the parents or guardians to make such a determination.

We encourage our families to consider these issues.:

What is the cut-off date for registering your loved one to vote?
What methods of voting does your state offer?
What are the rights of people with intellectual disabilities to vote in your state?
What are the rights of people in long-term care facilities to vote?
What caregiver assistance is allowed?
Can your loved one file an absentee ballot?
If they do vote with an absentee ballot, who is helping them to do so?

What are your thoughts regarding whether or not to register your loved ones. Do you feel they are capable of making an informed choice on issues that will affect their well-being?

Several of our members have brought up these issues, especially their concerns that they don't want the providers or caregivers at a facility to be steering the ballots for all of their residents toward their own choices in this election. So we do ask our families to consider these issues.

And please remember, we are not the only I/DD / autism group encouraging their members to participate in the election. There are several self-advocacy organizations encouraging their members to vote, and making it very clear which issues concern them.

So check into voting rights for your loved ones in your state.

16/08/2024

16/08/2024

This was just so sweet I had to share................

https://www.facebook.com/reel/1214886002987290

16/08/2024

If parents of children that are diagnosed with treatable medical conditions were told they may have to wait months or even years for treatment, there would be an extreme outcry from the media and citizens of our country.

But yet, we can tell families that are in crisis survival mode; that need immediate help and support for their child with severe autism or related disorders, that it will take months or years to get treatment.

WHERE IS THE OUTCRY FOR THESE FAMILIES?

13/08/2024

12/08/2024

https://www.click2houston.com/news/local/2024/08/05/kingwood-family-fears-for-safety-after-son-with-autism-epilepsy-waitlisted-for-treatment-center/

A Kingwood family is in fear for their safety while their son is waitlisted for a treatment center to help with intellectual and developmental disabilities.

10/08/2024

In this video, I discuss what I do about shoes that break easily by my son with severe autism. I talk about why I select the shoes that I do, and about how I...

10/08/2024

https://specialeducationaction.com/students-with-disabilities-arrested-and-referred-to-police-at-more-than-double-the-rate-of-students-without-disabilities/

A new report from Government Accountability Office (GAO) details the findings of GAO's investigation of U.S. Department of Education (USDOE) Office for Civil Rights' (OCR) Civil Rights Data Collection (CRDC) for the 2017–18 school year and of its investigation of the School Survey on Crime and Saf...

07/08/2024

https://cofarblog.com/2024/07/30/dds-finally-acknowledges-it-doesnt-keep-track-of-whether-there-are-vacancies-in-state-operated-group-homes/

For almost a year, we had been trying to clarify with the Department of Developmental Services (DDS) whether there are – and we suspect there are – continuing vacancies in the Department’s network …

06/08/2024

A Beaverton mother said her 15-year-old daughter may be forced into a group home if she can’t get into a brand new state program for children with disabilities.

03/08/2024

Note: For the past few decades, VOR has advocated for the rights of all people with intellectual disabilities and autism. We have consistently spoken on behalf of families whose loved ones with severe or profound ID/A, those who don't always fit into the policies and ideologies of the agencies that have been created to provide and oversee the programs, facilities, and opportunities that meet both their needs and their aspirations. We have tried to work with these agencies to ensure that our folks are represented in all of their platforms and that they won't be marginalized by the good intentions of those who promote inclusion.

A few weeks ago, the Administration for Community Living, the HHS Office of Civil Rights, the DOJ Office of Civil Rights, the Dept of Labor's Office of Disability Employment Policy, and representatives from the National Disability Rights Network all participated in a presentation celebrating the 25th Anniversary of Olmstead. For those who missed the event, the ACL has released the full video on YouTube.

While we do certainly acknowledge the strides that have been made for so many in the past 25 years, we cannot help being dismayed, and disappointed, that no mention has been made of those with severe/profound ID/A. While they acknowledge us in face to face meetings, they continue to act as though our family members do not exist - or are not worth mentioning in a public display of their work on behalf of people with I/DD and autism.

Click here to watch the ACLs celebration of Olmstead.

On June 20, 2024, ACL, the U.S. Department of Health and Human Services Office for Civil Rights, and the U.S. Department of Justice hosted this celebration ...

01/08/2024

Just one of many sacrifices families make when there is a disabled child living among them. We all need to encourage and support families as they make decisions that aren't always easy.