June 16, 2023

VOR's 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


We'd like to thank everyone who participated in

VOR's 40th Anniversary Annual Meeting

If you would like to provide feedback on what you liked, what you didn't like, or for how we might make the meeting even better next year, please write us at [email protected]

Speaker presentations from the Meeting may be viewed on our YouTube Page

or click on the links below:

Congressman Glenn Grothman

Rep. Charlie Meier

Amy S. F. Lutz, PhD.

State Reports are available for download on our website at


or directly at


National News:

CMS: Supporting Adults with Intellectual and Developmental Disabilities and Their Aging Caregivers

CMS recently released guidance for elderly caregivers of individuals with I/DD, with resources for families who need to consider the future care for the loved ones.

Nearly one million households in the United States include adults with intellectual and developmental disabilities (I/DD) living with and supported by an aging caregiver.1 Given national trends from institutional services towards home and community-based services (HCBS), the growing expectation by individuals with I/DD of living in the community, as well as population trends, experts expect increases in the number of people living at home with aging caregivers. Increases in the number of people with I/DD living at home with aging caregivers will also increase demand for state- and federally- funded services, primarily Medicaid state plan and HCBS waiver programs.

Most family members supporting an adult with I/DD are parents. Adults with I/DD often receive support from their parents and caregivers throughout their lives. As parents and caregivers age, they may become unable to support their adult child to the same extent because of illness or other health concerns. Other aging parents and caregivers may remain at home and require new supports to meet their own needs and those of the person they support. To assist state Medicaid and partner agencies to address the needs of adults with I/DD living with and supported by aging parents and other caregivers, CMS developed the following resources.


While Guardianship Laws have certainly been in the news lately, and with acknowledgement that there have certainly been abuses of guardianship, we understand that guardianship is an important responsibility in ensuring the well-being of those with severe/profound I/DD.

We present the following statement from Senator Casey in light of VOR's recent campaign asking Congress to examine and reform inconsistent policies among states when protecting individuals with I/DD and autism from abuse and neglect. We have been encouraging members of Congress to consider federal guidelines for federally funded programs that are administered by state governments.


Casey, Braun Urge Examination of Guardianship Laws

Press release from the Senate Department of Aging, May 31, 2023

Today, U.S. Senate Special Committee on Aging Chairman Bob Casey (D-PA) and Ranking Member Mike Braun (R-IN) sent a letter to the U.S. Government Accountability Office (GAO) regarding guardianship laws across the Nation. There are an estimated 1.3 million older adults and people with disabilities in guardianships, which are legal relationships created when a court determines that a person is incapable of making important decisions on their own. Considering the lack of data on guardianships across the U.S., Senators Casey and Braun requested GAO examine and report on guardianship laws throughout the country, the use of guardianships, and efforts to reform the guardianship system.

Excerpts from the Committee's request from a report for the GAO:

"Historically, there has been inadequate data on the use of guardianship and occurrences of abuse in the United States, suggesting that a review of new data is in order. We ask the Government Accountability Office (GAO) to provide us with a better understanding of the use of guardianship across states and how people are impacted by existing guardianship laws, occurrences of abuse, and proposals for reform.

What federal policies assist states in the oversight of guardianships, and how can federal policy help states seeking to adopt less restrictive alternatives such as those outlined in the ULC model guardianship law?"

Read the full press release here

He's Back

Tom Perez is returning to a position of influence.

Appointed by President Obama in 2009, Mr. Perez revamped Justice Department efforts in pursuing federal settlements and consent agreements under the Americans With Disabilities Act (ADA). He helped initiate class action lawsuits aimed at shutting down intermediate care facilities (ICFs) as an option for people with severe/profound I/DD. He also helped to develop the CMS setting rule.

In 2013, Perez was appointed Secretary Of Labor. It was here that he helped design the Workforce Opportunities Investment Act (WIOA), which served as a cornerstone in the campaign to eliminate 14(c) programs and sheltered workshops for people with I/DD and autism.

see below: ------------------------------------------------------------------------------

Tom Perez to Join White House as Senior Adviser

By Tyler Pager, Washington Post, June 7, 2023

Tom Perez, a former secretary of labor and chair of the Democratic National Committee, will join the White House as a senior adviser and director of the Office of Intergovernmental Affairs, according to two people familiar with the move.

Perez will replace Julie Chavez Rodriguez who left the White House last month to run President Biden’s reelection campaign.

In his new role, Perez will serve as the White House’s main liaison to governors, mayors and other elected officials outside of Washington. As a senior adviser, he is also expected to advise Biden on issues including labor and immigration, the people said, requesting anonymity to discuss a personnel move that was not yet public.

The White House declined to comment, and Perez did not immediately respond to a request for comment.

Perez, 61, served as secretary of labor in the Obama administration and worked with Biden, then the vice president, on workforce development issues. He also did a stint as assistant attorney general for civil rights at the Department of Justice.


State News:

Connecticut - Union to End Weekslong Strike at Group Homes

By Keith M. Phaneuf, CT Mirror, June 14, 2023

Officials say tentative deal offers ‘good’ raises, but inadequate state funding made $25 an hour wage goal unattainable.

The head of Connecticut’s largest health care workers’ union confirmed Wednesday the organization has begun to wrap its three-week-long strike against six nonprofit agencies that operate group homes and provide other services for clients with developmental disabilities.

Rob Baril, president of New England Health Care Employees Union, SEIU 1199NE, said tentative contracts were reached with the various nonprofits between Friday and early Wednesday morning.

Some of the 1,700 striking workers had returned to the job by Wednesday afternoon, and most should be back at work within a few days as tentative deals are ratified, Baril said.

And while neither the union nor the industry released details of the agreements, both sides confirmed they fell well short of labor’s goal of boosting wages within the next few years to $25 per hour. 

Though adversaries at the bargaining table, nonprofit and union leaders worked jointly this past legislative session, lobbying state officials for a major correction in state funding — a 9% increase in the fiscal year starting July 1 and another 7% bump in the 2024-25 fiscal year.

What they got from Lamont and the legislature was a 2.5% hike in the first year plus additional funding for wage support — only for nonprofits hired by the Department of Developmental Services — that raised the total increase beyond 3%. That growth was maintained in the second year of the biennium, but there was no additional increase.

Overall that represents $103 million in each year of the two-year budget.

Baril said that’s hard to understand given the record-setting surpluses state government has enjoyed in recent years. Connecticut wrapped last fiscal year about $4.3 billion in the black, a whopping cushion equal to nearly one-fifth of the entire General Fund.

Gian-Carl Casa, president and CEO of the nonprofit alliance, added that the worker shortage and wage issues are taking a toll on more than union members. Agencies continue to reduce program slots, or close services altogether, to deal with funding issues.

“Programs will be curtailed,” he said. “The state of Connecticut is no longer in that state of fiscal crisis, but nonprofits are.”

Read the full article here

Related Story:

Joseph E. Stiglitz, Columbia Business School Professor and Nobel Prize Economics, issued a statement in support of SEIU 1199NE’s strike against poverty. His message is directed to Connecticut Governor Ned Lamont, but clearly gives a message to Governors in all states, Stiglitz said.

“No publicly funded employee caring for others and working full time should be dependent on our welfare system. States must set standards for private employers that, when followed, relieve the pressure on welfare programs that merely prolong poverty. Raising wages for low-wage workers creates immediate savings in state budgets because they will no longer need to rely so heavily on public programs. It also stimulates the economy because we know middle-class workers will spend their raises as consumers of goods and services in our communities. Public dollars should be used to lift working people out of poverty, not keep them in poverty whether they are working on behalf of for-profit or nonprofit organizations.

“The costs of housing, healthcare, and childcare have increased rapidly, but wages for Black, Brown and white working-class caregivers have remained stagnant. Governor Ned Lamont needs to acknowledge that austerity policies have left the government ill-equipped to address the needs of our most vulnerable individuals. Failing to pay living wages to the workers who provide long-term care and essential services has weakened the economy as a whole.

“A healthy economy is one in which everyone has the economic security, support, and protection they need. A strong economy is one in which everyone prospers. It’s one built on the solid foundation of smart investments, and shared prosperity in recognition that all labor has dignity.”

Link to quote

Massachusetts - DDS Wrongly Claims Federal Law Does Not Give Individuals the Choice of Either the Wrentham or Hogan Centers

By David Kassel, The COFAR Blog, June 15, 2023

In a June 5 legal brief, the Department of Developmental Services (DDS) argues that federal law does not give persons with intellectual or developmental disabilities (I/DD) the right to placement at either the Wrentham Developmental Center or the Hogan Regional Center.

We think the Department’s argument in the brief misrepresents federal law, and reflects an unfounded bias among policy makers in Massachusetts against Intermediate Care Facilities (ICFs). The Wrentham and Hogan centers are the last remaining, congregate ICFs in the state.

As we argue below, we also think the DDS brief wrongly assumes that group homes necessarily provide their residents with more integration with the surrounding community than do ICFs. That assumption is based on an outdated perception of the way ICFs operate today, and an overly rosy perception of the community-based system.

As we have reported, a succession of administrations has allowed the residential population or census at the Wrentham and Hogan centers to decline. This decline is due to DDS’s apparent policies of denying admission to the ICFs to most persons who ask for it, and failing to inform persons looking for placements that those facilities exist as residential options.

The DDS brief appears to confirm those policies in stating that:

DDS avoids institutionalization at the ICFs except in cases where there is a health or safety risk to the individual or others, and generally, when all other community-based options have been exhausted.

The DDS legal brief was submitted in response to an appeal to the Department, which was filed by the mother of a man with I/DD who was denied admission to the Wrentham Center. We are withholding the names of the mother and her son, at the mother’s request.


Illinois - Health Care Workers Who Cover Up Patient Abuse Face Stiffer Penalties Under New Law   

By Molly Parker for Lee Enterprises and Beth Hundsdorfer for Capitol News Illinois, via ProPublica, June 13, 2023

Illinois Gov. J.B. Pritzker signed a bill into law on Friday that strengthens the range of penalties that a state watchdog can mete out for health care employees who conspire to hide abuse or interfere with investigations by the state police or internal oversight bodies.

The legislation was introduced following an investigative series by Capitol News Illinois, Lee Enterprises Midwest and ProPublica into rampant abuses and cover-ups at Choate Mental Health and Developmental Center, a state-run institution in southern Illinois that houses people with intellectual and developmental disabilities and mental illnesses. The new law applies to employees at state-run institutions and at privately operated community agencies for people with developmental disabilities and mental illnesses that operate under the oversight of the Illinois Department of Human Services and its Office of the Inspector General.

The news organizations detailed how employees had lied to investigators, leaked sensitive investigative details, retaliated against people who reported abuse and sought to indoctrinate new workers into the cover-up culture. Employees who engaged in such actions made it difficult to pursue cases of patient abuse, yet they rarely faced serious consequences. IDHS Inspector General Peter Neumer suggested the change in law last year.

The new law allows the OIG to report workers who engage in such misconduct to Illinois’ existing Health Care Worker Registry, which would bar them from working in any health care setting in the state.


Virginia - Henrico Parent Fights for Sservices for Son with Severe Autism: 'It's a Complete Failure'

By Melissa Hipolit, WTVR News, June 16, 2023

Cannon Jeter cherishes the good days with their son Kaleb, but those moments are getting harder to come by.

"I wonder what he's thinking. What he's going through," Jeter said.

Kaleb, 15, cannot talk due to his severe form of autism. His frustration often leads to outbursts which are getting more intense as Kaleb gets older and bigger.

"We've had holes beat out of our walls, the glass out of the door. We've shut down lanes of traffic due to him attacking, black eyes, busted lips, a fractured nose, bruises all over us, it's a lot," Jeter said.

In April, Kaleb broke an exterior door.

"He ended up smashing his fist through the entire window pane and just sliced himself from hands all the way up his wrist," Jeter said.

At this point, Jeter said they cannot handle their son, and he needs to be in a residential treatment home before he seriously hurts himself or someone else.

"He is 290 pounds right now," Jeter said. "It is terrifying. If he honestly doesn't get the help that he needs it's destructive for himself, it's constant injuries for everybody around him."

Jeter said they found the perfect place called Grafton Integrated Health Network.

Kaleb already goes to school there, and they have a group home as well.

But, there's one catch, something called the Community Living Waiver.

"It was great, or at least that's what I thought," Jeter said.

Kaleb was granted a highly-coveted waiver when he was seven years old.

Funded through Medicaid, it allows families to access services they wouldn't otherwise be able to afford.

"It's supposed to help him with community living, with behavioral therapies, just about every service you could imagine for these kids would be under this umbrella of this waiver," Jeter said.

But, while the waiver paid for the Grafton School, it does not cover room and board at the Grafton group home.

So, the family tried putting Kaleb in sponsored residential living, which is covered under the waiver.

But, within a week, the woman he went to live with was overwhelmed.

"She actually put his belongings out on the porch and was ready for us to pick him up and canceled services," Jeter said.

Jeter said they worked with Kaleb's case manager with Henrico Mental Health to find other alternatives, but none worked out.

"None of the places that provide services were interested in being able to help him, or they just weren't adequately staffed to be able to handle that behavior," Jeter said.

At that point, Jeter said they hoped the case manager would advance Kaleb's case to Henrico's Family Assessment and Planning Team, known as FAPT, but that was a struggle.

They have the power to authorize the use of additional state funds in cases like this.

"It comes down to every time I have presented this idea, it gets pushed back and it just goes away like it never happened," Jeter said.


Back Issues of VOR's Weekly Newsletter are available on our web site.

Please Click Here!

VOR Bill Watch:

[Please click on blue link to view information about the bill]


S.1332 / H.R.2941 - Recognizing the Role of Direct Support Professionals Act

Sen Maggie Hassan (D-NH) / Rep. Brian Fitzpatrick (R-PA) This bill requires the Office of Management and Budget to establish a separate category within the Standard Occupational Classification system for direct support professionals (i.e., individuals who provide services to promote independence in individuals with an intellectual or developmental disability) for data reporting purposes.

H.R. 553 - Workplace Choice and Flexibility for Individuals with Disabilities Act

Rep. Glenn Grothman (R-WI-6) - This bill would amend the Rehabilitation Act of 1973 to clarify the definition of competitive integrated employment.

H.R.1296 - Restoration of Employment Choice for Adults with Disabilities Act Rep. Glenn Grothman (R-WI-6) - To amend the Rehabilitation Act of 1973 to ensure workplace choice and opportunity for young adults with disabilities.

H.R.485 - Protecting Health Care for All Patients Act of 2023

Rep. Cathy McMorris Rodgers (R-WA-5) - This bill prohibits all federal health care programs, including the Federal Employees Health Benefits Program, and federally funded state health care programs (e.g., Medicaid) from using prices that are based on quality-adjusted life years (i.e., measures that discount the value of a life based on disability) to determine relevant thresholds for coverage, reimbursements, or incentive programs.

H.R.670 - Think Differently Database Act

Rep. Marcus Molinaro (R-NY-19) - This bill would amend title IV of the Public Health Service Act to direct the Secretary of Health and Human Services to establish a clearinghouse on intellectual disabilities, and for other purposes. Such clearinghouse shall include information on individual community-based services and long-term support services available to individuals eligible for medical assistance under a State plan under the Medicaid program under title XIX of the Social Security Act.

S.1298 - Supporting Our Direct Care Workforce and Family Caregivers Act

Sen. Time Kaine (D-VA) A bill to award grants for the creation, recruitment, training and education, retention, and advancement of the direct care workforce and to award grants to support family caregivers.

H.R.2965 / S.1333 - Autism Family Caregivers Act of 2023

Rep. Grace Meng (D-NY) / Sen. Robert Menendez (D_NJ) To award grants for providing evidence-based caregiver skills training to family caregivers of children with autism spectrum disorder or other developmental disabilities 

H.R.3380 - HEADs UP Act of 2023

Rep. Seth Moulton (D-MA) This bill authorizes the Department of Health and Human Services (HHS) to award grants to support health centers that provide services for individuals with developmental disabilities, including dental care. Grant recipients must provide specialized treatment to individuals with developmental disabilities as necessary.


S.533 / H.R.1263 Transformation to Competitive Employment Act

Sen. Bob Casey (D-PA) / Rep. Bobby Scott (D-VA 3) - This bill would support employers who wish to transform their facilities to provide only competitive integrated employment while forcing the elimination of programs that offer employment opportunities under Section 14(c) of the Fair Labor Standards Act. This bill would be unlikely to create a significant increase in employment for people with I/DD and autism, but would deprive over 120,000 individuals of the opportunity to work, develop skills, and be part of their community.

S. 1148 - The Guardianship Bill of Rights

Sen. Bob Casey (D-PA) - A bill to establish rights for people being considered for and in protective arrangements, including guardianships and conservatorships, or other arrangements, to provide decision supports. This bill would give ACL power to create a Guardianship Council and appropriate more money to P&As so they may encourage people to leave guardianships and move to Supported Decision Making. Dangerous over-reach in response to media hype on Britney Spears, et al.


S.100 / H.R.547- Better Care Better Jobs Act

Sen. Bob Casey (D-PA) Rep. Debbie Dingell (D MI) This bill establishes programs and provides funds for state Medicaid programs to improve home- and community-based services (HCBS), such as home health care, personal care, case management, and rehabilitative services.

The bill also makes permanent (1) the Money Follows the Person Rebalancing Demonstration Program (a grant program to help states increase the use of HCBS for long-term care and decrease the use of institutional care), and (2) certain provisions regarding Medicaid eligibility that protect against spousal impoverishment for recipients of HCBS.

S.762 / H.R.1493 - The HCBS Access Act

Sen. Bob Casey (D-PA) Rep. Debbie Dingell (D MI) While this bill purports to eliminate waiting lists and provide more Home and Community-Based Services for people with I/DD and autism, it favors the aspirations of those individuals who are most independent and neglects the very real needs of those most dependent on Medicaid Long-Term Services and Supports. It would not distribute funds appropriate to the varying needs of individuals, but to providers of HCBS programs. It fails to recognize the severity of the DSP and Nursing Crises, and paints an unrealistic picture of a simplistic solution. This is a purely political bill that would ultimately fail to make the extensive changes that the DD/A system needs.

VOR supports increasing funding for people with I/DD, but we have concerns that the above bills, in their current form, would discriminate against people with the most severe I/DD and autism and jeopardize the higher-care facilities that are most appropriate to their needs.

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 receive our newsletter.

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.

Please click here to Join, Renew, or Donate to VOR

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]

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Elk Grove Village, IL 60007

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