September 2, 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.

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VOR promises to empower you to make and protect quality of life choices for individuals with developmental disabilities

Happy Labor Day!

This is a great time to take a moment to appreciate all of the direct support professionals (DSPs) whose care and devotion brightens the lives of our loved ones with Intellectual and developmental disabilities, complex medical conditions, and autism. 

There is currently a crisis-level shortage of DSPs. It is crucial that we speak out to our elected officials and demand that they act to classify DSPs within the Office of Management and Budget and the Board of Labor Statistics immediately. and increase DSP wages so that they exceed the minimum wage of each and every state. We need to create training and certification programs in order to provide our long-term caregivers with long-term career paths, to ensure they can support their families and live their best lives as they help our loved ones to live theirs. 

Please reach out to your Members of Congress to support H.R. 4779 & S. 1437 - The Recognizing the Role of Direct Support Professionals Act, and speak with your state and local officials about increasing support for these vital caregivers.

Happy Labor Day!

This is also a great time to appreciate programs that create opportunities for people with intellectual and developmental disabilities to find meaningful work, develop skills, and be part of their communities through both competitive, integrated employment and 14(c) programs that offer commensurate wages to those who wish to work but whose challenges may exceed what most employers can reasonably accommodate. 



September 27, 2022

4 pm Eastern / 3 pm Central / 2 pm Mountain / 1 pm Pacific

VOR's next Quarterly Networking Meeting will take place on the afternoon of September 27th on Zoom. The topic this time will concern the challenges our families face when their loved ones with I/DD require  hospitalization. 

To register for the meeting, just email us at [email protected] with the subject line "Networking Meeting". Please include your full name and the state where you live. We will email you the link to the  Zoom meeting.




VOR invites you to NOT bake a cake, pie, cookies, or brownies for this event.

  • You do NOT have to find a recipe.
  • You do NOT have to shop for ingredients.
  • You do NOT have to break eggs, roll flour, or knead dough. 
  • You do NOT have to cook.
  • You do NOT have to clean up!






A warm feeling in your tummy,

that arises from the satisfaction of knowing you have helped an organization that helps families like yours to make their own choices to best care for their loved ones with I/DD!

***           Please click here to donate to our             *** Cakeless Bakeless Zero-Calorie Fundraising Event!

Or you may send a check for the amount you would like to donate to VOR at

386 S. Arlington Road, Elk Grove Village, IL 60007

All donations will be greatly appreciated! 

VOR Comments on House Energy and Commerce Republicans' Policy Statement

The Republican members of the House Energy and Commerce Committee submitted a policy statement recently and asked for the public to submit comments. VOR found several points of agreement, and several policies that we believe should be expanded to ensure that they cover the needs of the entire community of people with I/DD, not only those who receive waiver services or participate in competitive integrated employment.

To view the E&C Republicans' policy statement and VOR's comments, please click here

State News:

Alabama - IQ-based Qualifications Disconnect Could Leave Some Adults Diagnosed with Autism Without Services

By Will Blakely, 1819 News, August 28, 2022

Adults with autism but an IQ above 70 might not have access to new state services.

Bama Hager is caring for a 22-year-old with autism in Alabama. She said she hopes the Alabama Department of Mental Health's (ADMH) new Community Waiver will provide some community activities for her son. 

"There just isn't a whole lot available to this adult with autism population in Alabama," Hager said.

Hager considers herself an "Alabama autism advocate." She used to work for the Autism Society of Alabama, which is now known as Autism Support of Alabama.

Children with special needs may receive Individualized Education Plans (IEPs) and become qualified for services through their local school district and the Alabama Department of Education.

For adults, Alabama provides Medicaid waiver services to individuals with "intellectual disabilities." 

The new Community Waiver Program is now available in select counties and offers services to individuals with intellectual disabilities based on age and living situation. 

Someone has an intellectual disability when their IQ is below 70.

Hager said that there are many adults who have a diagnosis of autism who are not intellectually disabled. This means that they would not be eligible for assistance from the state after they turn 21 unless they have a co-occurring condition, such as schizophrenia.

"Autism is different," said state autism coordinator for the Alabama Department of Mental Health (ADMH) Anna McConnell. "It's not an intellectual disability."

According to Autism Speaks, 31% of children with autism have an intellectual disability; 25% are within IQ ranges of 71 to 85, and 44% have IQs above 85, which is considered average or above average.

Hager also said there are "extensive waitlists" for any Medicaid Waiver Services in the state, presenting an obstacle to even the individuals who do meet the IQ criteria.


Florida Medicaid Prepares as New Minimum Wage Approaches for Direct-Care Workers

By Christine Jordan Sexton, Florida Politics, August 30, 2022

Lawmakers appropriated more than $600 million to increase the wages long-term care providers pay their staff to $15 an hour.

To ensure the money is used to boost wages, Medicaid officials require providers to enter into a supplemental agreement with the state by Oct. 1.

The Agency for Health Care Administration, which houses the state’s Medicaid offices, has been sending notices ahead of the deadline. The latest reminder was sent out Monday afternoon.

Medicaid providers that don’t reimburse direct care staff $15 an hour beginning Jan. 1, 2023, can sue their employer in court. If they are successful, workers can recover the total amount of any back wages, liquidated damages the state assessed against a managed care provider (if any), and attorneys’ fees.

The law also allows workers who are not paid the minimum mandated amounts to pursue a class action lawsuit against their employers.

The wage agreement has been posted on the Medicaid Provider Secure Web Portal website since Aug.4. Providers failing to sign the agreement will be subject to recoupment of funds associated with the minimum wage requirement.


Dental Care:

Rule Change Could Improve Access To Dental Care For People With Disabilities

By Michelle Diament, Disability Scoop, August 29, 2022

Dentists say bureaucratic issues are forcing children and adults with disabilities across the nation to unnecessarily wait six to 12 months for care, but a fix could soon be on the way.

Three leading dental groups wrote to the Centers for Medicare & Medicaid Services earlier this summer citing “significant concerns” about access to dental procedures in hospitals and similar settings.

“The lack of (operating room) access for needed and covered dental procedures often results in wait times of 6-12 months for these patients, many of whom are children whose daily activities and school performance are often significantly affected in the interim,” wrote officials from the American Academy of Pediatric Dentistry, the American Dental Association and the American Association of Oral and Maxillofacial Surgeons.

“We attribute most of this access challenge to the lack of a sustainable billing mechanism for hospitals and (ambulatory surgical centers) to report dental surgical services in both Medicare and Medicaid,” the groups indicated.

Specifically, they said that with the existing billing code that hospitals use for dental patients who require operating room access, Medicare provides a rate of just $203.64, far short of the $2,334.87 average cost for such services. As a result, the dental groups contend that hospitals are reluctant to schedule their surgical cases.

Meanwhile, current Medicare regulations do not

allow for coverage of dental surgeries at ambulatory surgical centers, which dentists say could help to alleviate pressures stemming from  the lack of access to hospital operating rooms.

The impact is widespread, the letter notes, since Medicaid programs often model Medicare rates and both Medicaid and commercial insurance typically follow Medicare’s lead to determine what to cover.

Now, CMS is working to make changes. Under a new proposal, the agency plans to update the Medicare code that hospitals use to bill for dental procedures in operating rooms. The new code would allow for a payment rate of $1,958.92.

Dr. Jane Grover, senior director of the Council on Advocacy for Access and Prevention at the American Dental Association, said that if approved the CMS proposal “would take a significant first step forward toward improving access to needed dental surgeries for children and adults with disabilities.”

In addition, Grover indicated that “the dental community is continuing to advocate for reforms that would help to ensure there is sufficient operating room capacity to support dental surgical access for disabled patients served by Medicare and Medicaid.”


Advice to Families:

Planning for Your Retirement, and for a Child’s Special Needs, All at Once

By Martha C. White, New York Times, August 27, 2022

Under the best of circumstances, caring for an adult child with special needs is physically and emotionally taxing. As these parents age, the question of who will house, feed and drive their son or daughter after they no longer can becomes an urgent one.

But not all parents in this situation are aware of the myriad challenges they face. “Getting them to understand that they need to think differently about their retirement in this scheme of things is a key step. And it’s not simple,” said Mary Anne Ehlert, a certified financial planner and founder of Protected Tomorrows, a financial planning firm that specializes in families with special needs.

For example, Ms. Ehlert said, she has to consider a multigenerational time horizon for these clients’ portfolios. “We might be a little more conservative, but we still need growth. We need growth longer,” she said. But a conservative-leaning asset mix has drawbacks, too. “Conservative doesn’t always give us the growth we need,” she said.

In addition, many families opt for a portion of their portfolio to be in cash or cash-like liquid investments in the event that their child suddenly needs a new piece of expensive equipment, like a speech-assistive device.

Often, one spouse will sideline a career or leave the work force entirely to provide care, reducing their own ability to save for retirement. These families find their budgets strained by a host of ancillary costs: paying for gas to drive their children to therapy appointments and day programs; buying supplies like adult diapers and waterproof bedding, compression tights to promote circulation, specialized diets — the list goes on.

Even when the disabled individual qualifies for public health assistance, finding affordable, adequate housing is especially difficult. Some people require supervised care in a group home, while others need in-home care in a dwelling modified to accommodate physical limitations. In both cases, waiting-list times are measured in years.

Read the full article here

Direct Support Professionals:

Please share this offer with your loved one's

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

[email protected]

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.

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.

S. 4102 - SSI Savings Penalty Elimination Act - To amend title XVI of the Social Security Act to update the resource limit for supplemental security income eligibility.

H.R. 3733 - Essential Caregivers Act of 2021 - To amend titles XVIII and XIX of the Social Security Act to require skilled nursing facilities, nursing facilities, intermediate care facilities for the intellectually disabled, and inpatient rehabilitation facilities to permit essential caregivers access during any public health emergency under the Medicare and Medicaid programs.

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.


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 I/DD and Autism
Need a Voice in Washington, D.C.

For Four Decades, 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 have engaged in over eighty 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.

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
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