May 6, 2022
VOR Weekly News Update
VOR is a national non-profit organization that advocates for
high quality care and human rights for all people with
intellectual and developmental disabilities.
VOR promises to empower you to make and protect quality of life choices for individuals with developmental disabilities
Please Help Us Help:
Information Needed on Laws to Place Cameras in Group Homes

We received a call this week from a VOR member who wants to help craft a law to voluntarily place cameras into group homes, in order to help protect our family members from abuse.

She would like to know if anyone can help by showing us an existing law that she might use as a model.

If you know of such a law in your state, please contact us at [email protected].

Thank you!

Sunday, May 15, 2022
3 - 5 pm EDT / 2 - 4 pm CDT / 1 - 3 pm MDT / Noon - 2 pm PDT
(Nofe: Times have changed from previous announcement)

Virtual Meetings with Congressional Offices
Week of May 16 - 20
We will help our participants to arrange their own Zoom meetings with
Congressional Staffers

Debriefing & Feedback Sessions on May 16 & 17,
6:30 - 8 pm EDT

This is a great opportunity to introduce your family to those who represent you in Congress!
This year's initiative will focus on the diversity of individuals within the I/DD population,
the need to ensure parity for all services to meet the needs of all people with I/DD
and to help support Direct Support Professionals in all facilities

Registration is free. Donations are welcome.
You must be a current member of VOR to participate in the Initiative.

National News:
End To Public Health Emergency Could Have Consequences For People With Disabilities
By Michelle Diament, Disability Scoop, May 2, 2022
As the focus on COVID-19 fades and the federal government eyes an end to the emergency status that the pandemic triggered, officials are warning that big changes are coming for some disability programs.

Currently, the nation is under a public health emergency. With that in place, states have been able to access extra federal money for Medicaid so long as they do not drop most beneficiaries from the program. Federal officials also granted extra flexibility to home and community-based services providers who have been struggling to maintain staffing during the pandemic.

U.S. Secretary of Health and Human Services Xavier Becerra recently extended the public health emergency until July 15, but it’s unknown if the Biden administration will renew the designation beyond that point. Now, the Department of Health and Human Services’ Administration for Community Living is telling people with disabilities to be prepared.

“When the federal declaration of a public health emergency (PHE) expires, many of the flexibilities initiated during the PHE will need to be rolled back. This return to pre-pandemic operations will have far-reaching impacts for older adults and people with disabilities,” reads a notice from the agency. “Changes in Medicaid enrollment and eligibility will be particularly important — and potentially confusing or disruptive — for current enrollees.”

Once the emergency status expires, states will have 12 months to re-evaluate the eligibility of almost every one of their Medicaid beneficiaries.

Beyond redeterminations for Medicaid beneficiaries, advocates say that states need more guidance on what tools they will have to address the challenges of maintaining their workforce of direct support staff once some of the pandemic-related flexibilities they’ve been taking advantage of are no longer available.

“We urge HHS to not end the PHE until the agency can be sure that states and providers have sufficient staffing, processes, and plans in place to ensure access to HCBS and prevent individuals from being wrongly removed from benefits,” reads a recent letter to Becerra and Chiquita Brooks-LaSure, administrator of the Centers for Medicare & Medicaid Services, from the Disability and Aging Collaborative that was signed by over 30 advocacy groups.

In particular, a modification of states’ Section 1915(c) Appendix K emergency authorities has allowed for the use of telehealth and adjusted staffing ratios for Medicaid home and community-based services.

VOR's Annual Membership Meeting

Celebrate VOR's 39th Year of Family Advocacy

Sunday, June 12, 2022
On Zoom

Guest Speakers:
  • Jill Escher - President, National Council on Severe Autism; Escher Fund for Autism, Past President of the Autism Society San Francisco Bay Area
  • Kit Brewer - Executive Director, Project CU - St. Louis, MO; Director, Coalition for the Preservation of Employment Choice (formerly the Coalition for the Preservation of 14c)
  • Micki Edelsohn - Founder, Homes For Life; Author, “Mom with a Megaphone”

Reports from the States!
Family Networking Meeting!
Our World Renowned Cakeless Bake Sale!

As in previous years, the Annual Meeting will feature an open presentation from the
VOR Board of Directors and we will reveal the results of the current Board elections.

Registration is Open!
State News:
Oregon: New Lawsuit Opens a Window Into Alleged Sexual Abuse of Developmentally Disabled
Federal figures show extraordinary levels of victimization among a vulnerable population
By Nigel Jaquiss, Willamette Week, May 4, 2022
M.K. had never really had a close friend. And, in his late 20s, he’d certainly never had an intimate relationship with a woman.

But Ishah Fehon entered his life in a big way in 2019. She got him out of his Beaverton apartment and opened a new world to him. They barbecued, went to the beach, and played Frisbee golf. And, allegedly, they had sex.

Except Fehon was not M.K.’s girlfriend. She was his paid caregiver. He suffers from autism spectrum disorder and a number of associated impairments. And Oregon law says intimate contact between a caregiver and a client is sexual abuse.

A new lawsuit filed May 3 in Multnomah County Circuit Court exposes a thorny issue that gets little attention from law enforcement or the courts—the sexual abuse of disabled Oregonians like M.K. (WW does not identify alleged victims of sexual abuse without their consent.)

“This is a vulnerable population who has inherent difficulty advocating for itself, and people who are highly dependent on caregivers, often in their home,” says M.K.’s attorney, Peter Janci of the Portland law firm Crew Janci. “And there’s very little supervision.”

The lawsuit Janci filed this week alleges that two companies responsible for M.K.’s care—Self-Determination Resources Inc., a Beaverton nonprofit, and Destination: Autonomy LLC, a for-profit company headquartered in Hillsboro—were negligent in the provision of his care, resulting in “physical abuse of a vulnerable person.” The lawsuit seeks $6.25 million in damages.
Federal statistics show people with disabilities are four times more likely than people without disabilities to be sexually abused. And of those who are abused, people with disabilities are only about half as likely to report their abuse to police.
In Oregon, that vulnerability may be magnified by state policies that seek to integrate people with disabilities into the mainstream. Advocates say that approach is vastly preferable to institutionalization but may lack necessary safeguards and suffer from a complaint system that rarely detects abuse.

Beth Brownhill, who runs the Crime Survivor Project at Disability Rights Oregon, says the abuse statistics for developmentally disabled people such as M.K. are staggering. “More than 90% of people with developmental disabilities will be sexually assaulted,” Brownhill says. “Half will be assaulted more than 10 times over the course of their lifetimes.”

Like other states, Oregon promotes maximum independence for people with developmental disabilities. That policy led to the closure in 2000 of the last major group institution in the state, the Fairview Training Center, and a focus ever since on helping people with disabilities live the fullest lives possible.

The state recorded 107 complaints of sexual abuse against people with intellectual or developmental disabilities such as autism between 2019 and 2021. Fewer than 12% of those complaints were sustained. And statistics show that more than two-thirds of the investigations were completed late.

Maine - Letter: Health and Human Services Fails the Most Vulnerable
By Albert Edwards, Press-Herald, May 4, 2022

One of the true measures of a society is how well it cares for those who cannot, through no fault of their own, care for themselves.

My brother-in-law is intellectually and medically disabled and lives with mental illness. He has lived with these challenges since birth. He relies on a well-trained workforce and person-centered plan to allow him to function. He lives in a group home and attends a day program in Brunswick.

When the Legislature passed the budget last year, it incorporated into law a recommended 125% of the minimum wage be paid to direct-support professionals. Without notice, Maine DHHS changed the reimbursement formula and agencies received nowhere near that amount. My brother-in-law’s agency is short more than $300,000 because of this tactic, and this year’s supplemental budget did not provide the relief needed.

While Gov. Janet Mills and the Legislature put forth a plan to stop the closure of two veterans’ homes and provide oversight for the future, over a two-week period, 30 group homes for individuals with disabilities have closed. Many more will follow.

Does this administration not value people with disabilities equally to our veteran population? Now Maine’s DHHS has put in place its interpretation of federal Home and Community Based Services regulations that appear to be designed only for very minimally disabled individuals.

I fear the 2,000 individuals with disabilities on the waitlist will be a drop in the bucket compared to what is ahead. I call on the Legislature to not only fully fund into law the 125% minimum wage increase for direct support professionals but also to oversee DHHS as it does not appear to be committed to the well-being of those individuals it is charged to care for.

Tennessee General Assembly Votes to Invest $1 million to Increase Access to Adult-Size Changing Tables

On April 29, 2022, the TN General Assembly voted to invest $1 million to increase access to adult-size changing tables across the state. The Council is grateful to all those who informed their legislators about this important issue.

Help with toileting is a common need for adults who are aging or have disabilities and other conditions. Many adults and children need access to changing spaces that are larger than a baby changing table. Everyone deserves a safe, dignified, and clean toileting experience.

Without adult-sized changing tables, Tennesseans who need them must choose between changing in an unhygienic setting – like on a restroom floor – or remaining isolated from the community if they experience incontinence issues.

This issue affects family members, friends and caregivers who want to spend time with their loved ones in the community.

Because of this advocacy, the following actions are being taken to install new adult-size changing tables across TN.
  • The legislature provided $1 million to the TN Dept. of Intellectual and Developmental Disabilities (DIDD) to offer grants to community groups and businesses to install adult-size changing tables. The General Assembly doubled the amount that advocates originally requested for the grant program.
  • The Department of Transportation has agreed to install changing tables in all rest areas and welcome centers.
  • The Department of Environment and Conservation has agreed to install changing tables in all state parks.

Ohio - New Telemedicine Program for Those with Disabilities
By Jake Pietrasz, WTVG News, May 4, 2022
The Ohio Department of Developmental Disabilities launched a pilot with StationMD to provide 24/7 urgent telemedicine for up to 5,000 individuals with intellectual and developmental disabilities (I/DD).

StationMD uses telemedicine to deliver urgent care and behavioral health services to people with I/DD, which includes those with autism spectrum disorder, cerebral palsy, down syndrome and other intellectual and developmental impairments.

People with I/DD often have complex medical and behavioral issues that require a doctor’s immediate attention. Before this pilot, those individuals had nowhere else to go except for the ER, according to StationMD.

“Through StationMD’s partnership with the Ohio DODD, we are elevating the quality of care people with I/DD receive in Ohio. Whether an individual lives in urban Cincinnati or in a more rural area of the state, they now have immediate access to a team of doctors who understand their medical needs, and they can reach us on-demand, 24/7,” said Dr. Maulik Trivedi, Cofounding Physician at StationMD.
“We’ve repeated this model across more than a dozen states and the outcome has been consistent: individuals with I/DD get the appropriate medical care they need without leaving home.”

In more than 90% of StationMD’s virtual consultations, the doctor can resolve an individual’s medical issue, eliminating the need for an ER visit, StationMD said. The DODD hopes the pilot will reduce the number of ER visits which can be traumatizing to individuals with I/DD, StationMD said.

StationMD does not replace an individual’s primary care physician. It is intended to improve access to medical care and make it easier to help with non-life-threatening matters before they escalate.

VOR's Annual Meeting & Legislative Initiate help our families to participate in our organizations, to reach out to their Members of Congress, and to become better advocates for their family members with I/DD.

Those who have attended our June meetings in years past will recall what they spent on transportation to and from D.C... what hotel rooms cost, and what other expenses they incurred while in Washington. We ask that you consider giving a share of that expense, maybe part of the cost of airfare or a night at the Hyatt on Capitol Hill,
or even the cost of a quick lunch in the Longworth Cafeteria!

Any and all contributions will be graciously accepted.

Please help us to help you.
Please help us to help families like yours.
VOR Bill Watch:
[Please click on blue link to view information about the bill]


Modifying the Build Back Better Act to include language to provide funding for Intermediate Care Facilities in parity with increased funding for HCBS services, and to remove any provisions that would phase out or eliminate 14(c) wage certificate programs.

H.R. 4779 & S. 1437 - Recognizing the Role of Direct Support Professionals Act - To require the Office of Management and Budget to revise the Standard Occupational Classification system to establish a separate code for direct support professionals, and for other purposes.
H.R.6075 - The HEADs UP Act - To amend the Public Health Service Act to expand and improve health care services by health centers and the National Health Service Corps for individuals with a developmental disability as a Medically Underserved Population (MUP).

H.R.4761 - A bill to amend the Rehabilitation Act of 1973 to ensure workplace choice and opportunity for young adults with disabilities.

H.R.4762 - A Bill to amend the Rehabilitation Act of 1973 to clarify the definition of competitive integrated employment.


S. 3417 - The Latonya Reeves Freedom Act of 2021 - This bill may be seen as the offspring of the Disability Integration Act from the 116th Congress. It misrepresents Olmstead, and contains provisions that would be harmful to the existence of ICFs, including a section that would promote lawsuits against larger congregate care facilities.

H.R. 603 & S. 53 - The Raise the Wage Act - These bills are aimed at raising the minimum wage, but they also have provisions to phase out and ultimately eliminate vocational centers and 14 (c) wage certificates over the next six years and to immediately stop the issuing of any new certificates. VOR believes the issue of employment options for individuals with intellectual disabilities should not be buried in a bill for raising the federal minimum wage. Both issues deserve clean, stand-alone bills.

H.R.1880 - To amend the Deficit Reduction Act of 2005 to make permanent the Money Follows the Person Rebalancing Demonstration.

H.R. 2383 & S. 3238 - The Transformation to Competitive Integrated Employment Act - this bill purports to assist employers providing employment under special certificates issued under section 14(c) of the Fair Labor Standards Act of 1938 in transforming their business and program models to models that support individuals with disabilities through competitive integrated employment, to phase out the use of these special certificates. We feel that, if enacted, tens of thousands of people with I/DD and autism will still be forced out of opportunities they currently, needlessly, and left without viable alternatives to occupy their time or address their needs and their abilities.

H.R.4131 & S.2210 - The Better Care Better Jobs Act - To be clear, we don't oppose this bill. We object to the fact that it excludes the most vulnerable members of the I/DD population.

While the Better Care Better Jobs Act would greatly increase the amount of federal funding for people with I/DD, it only supports those in waiver programs receiving Home and Community Based Services. It unjustly discriminates against those who have chosen Intermediate Care Facilities as the necessary and proper form of residential treatment. By giving a 10% increase n federal matching funds only to HCBS clients, and providing training and increased pay only to direct support professionals working in HCBS facilities, the act deliberately favors one form of treatment over another, one ideology over another, and one set of people with I/DD over another.
Help Us Help:
Families of individuals with severe/profound intellectual and developmental disabilities and autism need a voice in Washington, D.C.

For 39 Years, VOR Has Been That Voice

Please help us to continue to speak truth to power about the need for a diverse range of services, increased funding, and a full continuum of care to meet the needs of all people with I/DD and Autism.

This year, we engaged in over sixty meetings with Congressional Staff. Together, we have advised on bills to protect Intermediate Care Facilities, to preserve 14(c) opportunities for individuals with I/DD, and to increase pay, training, and benefits for direct support professionals to alleviate the DSP crisis.

We have contacted attorneys from the Department of Justice’ Civil Rights Division concerning increased mortality rates among people with I/DD in wake of the closing of state operated intermediate care facilities in Virginia. We have met by Zoom with the same DOJ attorneys concerning their current action in to move people out of ICFs in Iowa. Just today, we met with leadership of the Administration for Community Living to discuss our mutual concerns and to offer paths forward to help serve all people with I/DD,

In order to have such a presence in D.C., we have had to change with the times. Covid made in-person meetings next to impossible. We have had to adapt to holding virtual meetings on Zoom or WebEx. In order to compete with larger, better-funded organizations, we have had to hire the lobbying firm of Health Policy Source to advise us on how best to approach the powers that be and to facilitate our access to congressional staff. This has cost us, but we feel this has been money well spent. Now, we are asking you to help support us in this effort.

Direct Support Professionals:

Our loved ones' caregivers are essential to their health, safety, and happiness.
In appreciation of their good work and kind hearts, VOR offers free digital memberships to any DSP who would like to join.

We encourage our members to speak with their loved ones' caregivers to extend this offer of our gratitude.

If you are a Direct Support Professional interested in receiving our newsletter and e-content, please write us at

with your name, email address, and the name of the facility at which you work. Please include the name of the VOR member who told you of this offer.
Shop at Amazon?

Use Amazon Smile instead, and 0.5% of your purchase price will go to VOR!

  1. Just go to instead of the regular Amazon site, and sign in with your account credentials.
  2. Amazon should then give you a prompt to Select A Charity.
  3. Type into the search box: VOR - Elk Grove Village and click on the Select button.
  4. Now, bookmark the Amazon Smile page and paste it into your Bookmarks Toolbar, so that every time you go to Amazon, you go through the SMILE portal.

What's Happening In Your Community?

Is there an issue in your loved one's home that you need help with?
Do you have information or a news story you would like to share?
Is there legislation in your state house that needs attention?

Contact us at [email protected]
836 South Arlington Heights Road #351 Elk Grove Village, IL 60007
Toll Free: 877-399-4867 Fax: 877-866-8377