September 30, 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.

Follow us on Facebook
Watch us On YouTube
Click here to Join, Renew or Donate
VOR promises to empower you to make and protect quality of life choices for individuals with developmental disabilities


VOR's Fall Membership Campaign

Once again, we are asking our members to reach our to friends, family, and members of their communities and ask them to join the community that is VOR.

This year, we hope to expand our base, and include more people whose loved ones receive services in private ICFs or through home and community-based services, or who participate in14(c) Employment Programs. 

For nearly forty years, VOR has spoken out in support of high quality care and human rights for all people with intellectual and developmental disabilities, complex medical conditions, and autism.

VOR supports a full continuum of care and true

person-centered planning, based not on a monolithic ideology of community living,

but on the needs of the individual.

VOR supports CHOICE

in all forms of residential care, day program activities, and employment.

Click here to help support our mission

National News:

$100 Million Going Toward Autism Research

By Shaun Heasley, Disability Scoop, September 23, 2022

The National Institutes of Health is making major investments into research projects looking at how autism impacts a person’s development, sleep, mental health, aging and more.

The federal agency said this month that it is awarding $100 million to nine different research efforts over the next five years through its Autism Centers of Excellence program.

The centers will establish external advisory boards that include parents of those with autism or people on the spectrum themselves and they will work with the autism community to understand any relevant needs and concerns and share their findings.

Projects that will be funded through the Autism Centers of Excellence program include a Columbia University effort focused on infants at high genetic risk for autism and other neurodevelopmental conditions, a Stanford University examination of the relationship between autism and sleep disturbances and a University of North Carolina at Chapel Hill study looking at brain and behavior development in kids — including many who are at high familial risk for autism — who have been followed from infancy to adolescence.

In addition, awards are going to Drexel University to examine the use of medical services in underserved populations with autism, a Duke University study focused on developing new methods for screening kids for autism, a project at the University of Wisconsin-Madison following adults with autism as they age, an investigation of the emotional and mental health of adults with autism at the University of Pittsburgh, an effort at the University of Virginia to establish methods to identify adolescents and adults who are frequently misdiagnosed, diagnosed late or overlooked altogether and a Johns Hopkins University study looking at how genetic and environmental factors impact autism and health outcomes.

Read the full article here

Senate Passes Grassley-Klobuchar Bill to Help Find People with Autism, Alzheimer’s Who Go Missing

By KAALTV - ABC-6 News, September 23, 2022

The Senate unanimously passed legislation on Thursday to help families locate missing loved ones with Autism, Alzheimer’s disease or related conditions.

The bill to extend Kevin and Avonte’s Law was introduced on Monday by Judiciary Committee Ranking Member Chuck Grassley (R-IA), and Minnesota Senator Amy Klobuchar (D-MN).

The original law, authored by Grassley and passed in 2018, is named in honor of two boys with autism who wandered away from supervised settings and drowned.

One of the two, 9-year-old Kevin Curtis Wills, died in 2008 in the Raccoon River near his home town of Jefferson, Iowa.

The other, 14-year-old Avonte Oquendo of Queens, New York, drowned in NYC’s East River in 2014. 

Six year-old Hamza Elmi of St. Cloud, Minnesota, who was also diagnosed with autism, drowned in the Mississippi River near his home in 2015.

The extension that passed Thursday continues programs established under the law to support training for caregivers to prevent and respond to instances of wandering.

The bill reauthorizes an alert program to help notify communities about missing individuals with Alzheimer’s Disease, autism and other developmental disabilities. 

It must now be passed by the U.S. House of Representatives before it can be signed into law.

Read the full article here

State News:

Kansas - Parents of Disabled Kids urge Lawmakers to Expand Aid & Fix Issues with Health Care System

By Rachel Mipro, Kansas Reflector, September 27, 2022

A Kansas mother struggling to balance treating her cancer with caring for her disabled children urged lawmakers Monday to provide more support for people like her.

Kathy Keck, a mother of five kids, three of whom have developmental and medical disabilities, said she left the workforce more than five years ago to care for her children. Now, with a mastectomy scheduled, Keck said she doesn’t know who will watch them while she is recovering. 

According to Keck, her daughter’s full-time nurse covers 52 hour a week, and her husband, a full-time nurse, handles 40 hours of child care per week, leaving Keck in charge of her daughter for about 76 hours per week. Keck doesn’t know what to do for her six- to eight-week mastectomy recuperation period, where she won’t be able to do any heavy lifting.

“I too have concerns about another mastectomy, but the biggest cause of stress and anxiety is not knowing how I will care for two of my three disabled children/adults long enough to take care of my own medical needs and recover with the ongoing workforce crisis,” Keck said in testimony submitted to the Robert G. Bethell Joint Committee on Home and Community Based Services and KanCare Oversight. 

Keck asked lawmakers at the meeting to address systemic issues by increasing medically necessary nursing care for children on the Technology Assisted Waiver, a Kansan waiver that provides people with services such as personalized medical care, and find ways to address the statewide shortage of qualified health care workers. 

Keck said the KanCare system, the state-administered form of Medicaid in Kansas, needs to be fixed. “What is happening in our system is a lot like cancer,” Keck said.

An issue brought up several times during the seven-hour meeting Monday was the waitlist for receiving aid for intellectual and developmental disabilities.

More than 4,800 Kansans are currently on a waiting list for the Intellectual and Developmental Disabilities HCBS waiver program, according to the Kansas Department for Aging and Disability Services. The waiver program provides extra resources, support staff and overnight care options, along with other disability aids.

Parent Rick Elskamp said his 21-year-old daughter, Sheridan, got on the waitlist in 2013 and is still waiting for help, with advisers telling him the wait could be anywhere from 10 to 15 years.

“It should not be this difficult getting the funding for services Sheridan deserves. Could you imagine waiting 10 years after suffering a disabling injury to get benefits?” Elskamp said in his testimony.



Bonuses Flowing to Kansas Workers Providing Direct Care for People with Disabilities

By Tim Carpenter, Kansas Reflector, September 28, 2022

The president of the nonprofit Developmental Services of Northwest Kansas lauded the state’s distribution of unique retention and recruitment bonuses to thousands of people providing direct care for individuals with disabilities.

Jerry Michaud, who leads the organization serving 18 counties in the northwest corner of Kansas, said workers engaged in “challenging and meaningful” service to people with intellectual and developmental disabilities welcomed a slice of $51 million in federal funding set aside by the state for bonuses.

“These resources have allowed us to thank these designated staff for their ongoing commitment to serving others every day in the community,” Michaud said. “Upon receipt, one staff teared up and said, ‘You have no idea how glad I am to hear this.'”

Gov. Laura Kelly said the Kansas Department for Aging and Disability Services established a system to funnel bonuses to 18,000 full-time and 10,000 part-time care workers in Kansas.

KDADS designed a process whereby funding would be distributed to three private insurance companies under contract to provide Medicaid, or KanCare, services across Kansas. The resulting bonus payments to direct-care workers and supervisors engaged in home and community-based services must be completed by March 30, 2023.

In April, the Kelly administration announced plans to put together the bonus program with $51 million received under the federal American Rescue Plan Act passed by Congress in 2021. At that time, the goal was to provide 24,000 bonuses of up to a $2,000 each. Recruitment bonuses were to be in the range of $1,500 per person.


Comment: While VOR applauds the allocation of funds to support Direct Care Professionals, we are concerned that these funds represent a temporary band-aid solution to a chronic problem. The funds were allocated by the Federal Government to the state under the American Rescue Plan Act, specifically for DSPs working in HCBS settings only. Not only does this create a disparity of support for one set of caregivers instead of equally distributed support for all caregivers, but the funds are only available for a single year. The DSP crisis is not going away, and temporary solutions will not get to the root of the problem. 

Vermont - Opinion: We must Work Together for our Adults with Intellectual and Developmental Disabilities

By Elizabeth Campbell, VT Digger, September 26, 2022

ike every other Vermont parent who has an adult son or daughter whose intellectual/developmental disabilities significantly limit their ability to express, protect and care for themselves, I was horrified to read the recent VTDigger article, which describes the sadistic and cruel treatment of two adults with developmental disabilities by their shared living providers.

Most Vermonters are surprised to learn that for the last 30 years, Vermont has routinely placed adults like my son in adult foster care (called shared living) when their parents are no longer able to care for them at home. 

Placing someone as vulnerable as my son in adult foster care/shared living is like placing your elderly parent with significant dementia in adult foster care, where they’d be a guest in a series of strangers’ homes, with minimal quality-care oversight. Most people would agree that this is not a good idea, which is why 85 parents like me, with adult sons and daughters like mine, have banded together to form the grassroots, parent-led Developmental Disabilities Housing Initiative.

Our goal is to raise awareness of state practice that potentially puts the most vulnerable adult Vermonters at risk for the nightmare scenario described in VTDigger’s article, and to provide our life-long vulnerable adult sons and daughters with a safe and stable place to live and friends to live with, long after we, their parents, are gone. While we recently successfully advocated for legislation that opens the door to developing housing options in addition to adult foster care/shared living, parents can’t do this alone. 

We need the designated and special services agencies, housing finance organizations and housing authorities to partner with us to develop the kinds of safe, stable, service-supported housing models that exist in many other states.   

Together, we can do better.

Read the editorial here

Read the article "4 Caregivers for Vulnerable Adults Charged with Abuse and Neglect" here 

Iowa - State, County Officials Ponder Future of Glenwood Resource Center Property

By Joe Foreman, Opinion-Tribune, September 27, 2022

Discussions continue to take place concerning the future of the property that currently houses the Glenwood Resource Center (GRC).

In April, Gov. Kim Reynolds announced the closure of the state-managed facility that provides residential care and other services for Iowans with intellectual and developmental disabilities. At the time of the closure announcement, the GRC housed 150 residents with intellectual and physical disabilities and employed over 400 workers. The state intends to have the GRC closed by the end of 2024.

According to the Iowa Department of Human Services (IDHS), the GRC will continue to provide care for its residents over the next two years while working with their guardians and families to transition them to community placements or other facilities. Staff members are being offered retention incentives to continue working at GRC during the closure process. IDHS says it will also assist staff in identifying new career opportunities in Iowa as their employment nears an end. 

Additionally, the state said it will work with local government officials and community leaders to minimize the impact on the Glenwood community and Mills County, and to identify alternative uses for the GRC campus after the facility closes. 

“The state wants to turn it over to a group here in Mills County with some state representation, local and county,” State Rep. David Sieck of Glenwood said last week during an interview with The Opinion-Tribune.

Sieck said he envisions the campus shared by public and private entities after the state vacates the property in 2024.

Read the full article here

VOR continues to work with parents of the displaced individuals, the state, and community leaders to encourage the retention of some of the the Glenwood resources and staff to provide for those whose needs can not be met in home and community based settings. 

Direct Support Professionals:

Seniors are Stuck Home Alone as Health Aides Flee for Higher-Paying Jobs

By Christopher Rowland, Washington Post,September 25, 2022

Racked with nausea and unable to leave the bathroom, Acey Hofflander muttered in confusion. Her husband tried to press a damp washcloth against her neck, his hands trembling and weak from Parkinson’s disease.

“What’s happening? What’s going on?” Acey mumbled.

Their roles had unexpectedly reversed. At 85, Acey is the healthy one, the organized, energetic caregiver for husband, Tom, 88. But when a grueling day of showering, dressing, feeding and transporting him to medical appointments pushed Acey beyond exhaustion in July, she wound up in the emergency room — a health crisis the Hofflanders blame in large part on a lack of professional, in-home care.

Amid a national shortage of home-care workers that deepened during the covid-19 pandemic, the couple spent much of this year on a private agency list waiting to be assigned a professional home-care aide. But over four months, from April to August, no aides were available, leaving Acey to carry the load on her own. Many nights — after an hour-long bedtime routine that included giving Tom his pills and pulling on his Depends before tucking him into his recliner — she lay sleepless in bed.

“He needs a lot of care, and it’s wearing, not only physically but mentally,” Acey said in one of several interviews. “It makes you worried about what’s going to happen. How long can I do this?”

The Hofflanders’ story is becoming increasingly common as the country’s shortage of home-care workers worsens, jeopardizing the independence of a generation of elderly Americans who had banked on aging in place rather than spending their twilight years in nursing homes.

Polls say an overwhelming majority of people older than 50 want to remain in their homes as long as possible, and studies have shown aging in place can promote quality of life and self-esteem. But Acey Hofflander’s health scare — she stayed in the hospital overnight with a form of migraine — reveal the dangers when elderly people are forced to go it alone.

The shortage predates the pandemic but has been exacerbated by it, according to industry and government experts. Demand for home services spiked as lockdowns, uncontrolled infections and deaths frightened people away from nursing homes, where the number of residents declined nationally from about 1.3 million in 2019 to 1.1 million in 2021 and has only partially rebounded in 2022. At the same time, because of the tight labor market, the low-paid workers have quit for less taxing jobs in Amazon warehouses and as Uber drivers.

The lack of services also is affecting disabled people under 65 years old who are dependent on others for daily needs.

The result is that an increasing share of elderly and disabled people are living at home but having difficulty finding the help they need to do it safely. A fall or an exhausted caregiver could mean they are forced into a nursing home or a bedroom in their adult child’s home.

“The crisis is real and won’t be quickly fixed. The shortage of health care workers is like nothing we’ve seen before,” said Ruth Martynowicz, chief operating officer for Michigan-based Trinity Health At Home, part of a large Catholic health system. Trinity Health At Home said recently it was turning away 250 home-care requests per week across its 11-state network, which is mostly in the Northeast and Upper Midwest.


VOR readers know that the DSP shortage has his every sector of the support /caregiving services. We continue to call on Members of Congress, the Administrations for Community Living, the President's Committee on People with Intellectual Disabilities and others to develop long-term solutions to the crisis and to rebuild our failing system of supports for vulnerable Americans.

Innovative Program Prepares NYC Youth for Careers in Disability Field

Staten Island LIVE, September 27, 2022

An innovative program is working with New York City youth — including Staten Islanders — to prepare the next generation of professionals with high-level training in the disability field.

The program between AHRC New York City, a non-profit supporting people with disabilities, and New York City is addressing the workforce crisis facing the field through AHRC NYC’s Advance & Earn, which is working to prepare youth to become new direct support professionals (DSPs).

Participants in the program receive 20 weeks of intensive training, learning from top professionals in the field while gaining 250 hours of paid internships at organizations in the disability community. They also are able to earn their high school equivalency — offering the opportunity to join the direct support professional track, leading to credentials and certification.

Steven Natal of Stapleton dropped out of high school in 10th grade, but knew he wanted to pursue a career. He enrolled in Advance & Earn in fall 2021, and earned his high school equivalency in December. He thrived in his paid internship as a student mentor with the Melissa Riggio Higher Education Program at the College of Staten Island (CSI) in Willowbrook and was offered a job.

In Advance & Earn’s 2021 fiscal year, 97 participants obtained their high school equivalency, 234 earned a credential for direct support professionals, commercial driving, certified nurse’s assistant and EKG/phlebotomy, culinary arts, masonry and landscaping, or green energy efficiency, while 114 got a job.

Read the full article here

Medical News:

New Study shows Higher Rate of Fractures in People with Intellectual Disability

Mirage News, September 30, 2022

In the most comprehensive study of its kind, researchers at the University of Oxford and Oxford Health NHS Foundation Trust found a substantially higher rate of fractures in people with intellectual disability compared with people of the same age and gender without an intellectual disability.

The researchers, led by Senior Clinical Researcher Valeria Frighi at the Department of Psychiatry, looked at rates of fracture recorded either in general practice or in hospital records, over a 20-year period, 1998-2017. They compared rates between 43,000 individuals with intellectual disability (also known as learning disability) and 215,000 without, throughout the life course.

The study, published open access in eClinicalMedicine, found that fracture rates are substantially higher in those with intellectual disability. Fracture incidence starts to rise as people get older, but in those with intellectual disability the rise begins many years earlier than expected.

The types of bones most affected by the fractures points to early onset osteoporosis as the underlying basis for the increased rates. Hip fracture rates are particularly raised. Comparable rates of hip fracture occur approximately 15 to 25 years earlier in people with intellectual disability. For example, at age 45, women with intellectual disability have a rate of hip fracture similar to 60-year-old women without intellectual disability. Forty-five-year-old men with intellectual disability have similar rates of hip fracture to 70-year-old men without intellectual disability.

Hip fractures are devastating for the individual, often lead to permanent physical disability, can lead to premature death, and are extremely costly for NHS and social care. To a large extent, they are also preventable if the risk is recognised and adequately managed.

Ongoing research by the same team is investigating the reasons for such high rate of fracture in people with intellectual disabilities. These could include impaired bone mass due to limitations in mobility and sedentary lifestyle, a tendency to fall, and accompanying medical conditions.

Read the full article here

Download the research article here

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.

H.R. 3089 & S. 1544Accelerating Kids' Access to Care Act - This bill requires state Medicaid programs to establish a process through which qualifying out-of-state providers may enroll as participating providers without undergoing additional screening requirements. Among other things, a qualifying provider must (1) serve minors, or adults whose condition began as a minor; and (2) have previously been screened for Medicare participation or for participation in the Medicaid program of the state in which the provider is located.

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 ninety 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.

Please click here to join, renew your membership, or contribute to VOR

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
Facebook  Twitter  Youtube  
FACEBOOK: /VOR ----- TWITTER: @VOR_NET ----- YouTube