November 10, 2023

VOR's Weekly News Update

VOR Speaks Out on

Section 504 of the Rehabilitation Act of 1973

Discrimination on the Basis of Disability in

Health and Human Services Programs or Activities

The Department of Health and Human Services has issued a proposed rule "Discrimination on the Basis of Disability in Health and Human Service Programs or Activities", intended to update, clarify, and strengthen the implementing regulation for Section 504 of the Rehabilitation Act of 1973.

VOR contends that the policies of HHS, and the actions taken over the years by the Administration for Community Living and several of the organizations they subsidize (including State P&As and DD Councils, University Centers for Excellence, and the National Disability Rights Network) have regularly committed acts of discrimination against those with the most severe and profound intellectual and developmental disabilities and their families.

VOR's Fall Fundraising Campaign

It is November.

This is a critical time for all of our fundraising efforts.

More that 2/3 of our donations come at during the months of November and December, and we need your support.

Please help us, so that we may continue to help you.

Thank you for your support!

There is still time to submit your comments

on the proposed update to HHS’ Section 504 Rule

Comment Portal closes on November 13th

• Federal Register Notice: Full text of the proposed regulations

(Includes the link to submit your comments)

Additional information and links:

• ACL Blog Post: from Alison Barkoff
• Fact Sheet: from the HHS Office for Civil Rights (available in multiple languages). 
• Press Release: HHS Issues New Proposed Rule to Strengthen Prohibitions Against Discrimination on the Basis of a Disability in Health Care and Human Services Programs. 
• Press Conference: HHS and disability community leaders discuss the proposed rule.
• View Posted Comments: Statements from community leaders and organizations,



VOR's Fall Legislative Initiative

VOR's Fall Legislative Campaign has exceeded our expectations. For most of October, we have been meeting several times each day with Congressional Staffers,

discussing the needs of our families and of people with severe or profound I/DD and autism.

An opportunity to speak out in favor of 14(c) programs from the U. S Department of Labor:

VOR has always supported the rights of people with ID/A and their families to have the right to make their own informed choices as to the care and socialization they want. We also support maintaining and investing in a full range of residential services and employment opportunities for our loved ones.

Through that lens, we have focused on a few bills that affect our families. The issues we are covering concern the critical shortage of Direct Support Professionals and the attempts to eliminate sheltered workshops and 14(c) employment opportunities.

At this point, we have paused the campaign, in order to focus on fundraising. We will continue to reach out, but we are planning on taking a longer period to reach out, so that we don't overextend our resources and personnel.

For more information on our Fall Legislative Campaign,

please see our website at www.vor.net.

DOL - Final Section 14(c) Stakeholder Engagement Session - Registation is Still Open

·      

Stakeholder Engagement Session #3: 

November 15, 2023, from 5:30 to 7:00 PM ET.

Members of the public wishing to participate must register in advance of the meeting by November 1. Click here to register

For more information about these sessions, please click here

Available at:

Thrift Books: Click here 

Bookshop: Click here

Banes & Noble :Click here

Amazon: Click here

Opinion: I’m Tired of Disability Activists Pretending My Son Doesn’t Exist

By Amy S.F. Lutz, The Washington Post, November 8, 2023 

You can’t miss my son Jonah, 24. He’s the one spinning while blasting “Sesame Street” songs from his iPad in the back corner of Costco. The one popping up from a table at Five Guys, splashed with so much ketchup he looks like a murder victim. The one pounding on his head in agitation, sometimes for obvious reasons (he was directed to the pink waterslide instead of the blue one) and sometimes for seemingly no reason at all.

Jonah is incapable of passing through the world unnoticed — except, somehow, by policymakers and certain neurodiversity activists, who seem intent on denying that people with his level of disability exist and require extensive accommodation and care.

Take, for instance, the Labor Department, which announced in late September that it plans a “comprehensive review” of Section 14(c) of the Fair Labor Standards Act, which allows some vocational programs to pay some adults — overwhelmingly people with significant cognitive impairments — a subminimum wage based on standardized assessments of their productivity.

These programs offer job training for intellectually disabled adults interested in pursuing competitive minimum-wage jobs, as well as long-term opportunities for those whose impairments preclude conventional employment but who benefit from the structure, dignity and satisfaction of work.

That, however, is not how critics describe 14(c) settings, which for years have been targeted by disability rights activists perpetuating an image of evil capitalists getting rich off the sweat of impoverished, disabled workers. To date, 16 states have eliminated this subminimum-wage model.

I want to make clear that I think everyone in these debates is motivated by the same commitment: to help those with autism and severe intellectual and developmental disabilities live full, meaningful lives. But as the parent of a profoundly autistic son, I find the discourse by anti-14(c) activists alarming because of how little their narratives reflect reality.

Amy S.F. Lutz is a historian of medicine at the University of Pennsylvania, a founding board member of the National Council on Severe Autism and the author, most recently, of “Chasing the Intact Mind: How the Severely Autistic and Intellectually Disabled Were Excluded from the Debates that Affect Them Most.” (Also very highly recommended!)

Read the full article here

More Medical Schools Expected To Train Doctors On IDD

By Michelle Diament, Disability Scoop, November 6, 2023

A new effort is underway to dramatically expand training on intellectual and developmental disabilities at the nation’s medical schools.

The health insurance company Elevance Health is putting up $1.42 million in funding with a goal of more than doubling the number of medical schools preparing future doctors to care for this population.

The investment will back the National Inclusive Curriculum for Health Education Medical, or NICHE Medical, an initiative of the American Academy of Developmental Medicine and Dentistry that helps medical schools develop and implement a curriculum on intellectual and developmental disabilities.

Currently, 20 medical schools are supported by NICHE Medical, representing just 10% of all the programs across the country. With the funding, that number is expected to grow to 25%, Elevance Health said, a threshold that’s likely to encourage all medical schools to follow suit.

“More than half of medical students have no training in caring for adults with IDD, and education about children with IDD remains minimal as well,” said Dr. Priya Chandan, who serves as NICHE Medical project director and clinical associate professor in physical medicine and rehabilitation at the University of Louisville School of Medicine. “However, Elevance Health’s collaboration and landmark funding is going to accelerate the inclusion of IDD in medical education, empowering thousands of future physicians across the nation to equitably and effectively address the needs of patients who have IDD.”

Over the next five years, the new funding is expected to support curriculum implementation at an additional 28 medical schools as well as scholarships,

The lack of training on developmental disabilities at medical schools has led to significant challenges in accessing health care. A 2022 study found that just 41% of physicians considered themselves able to provide patients with disabilities a similar quality of care to others.

Read the full article here

Study Sheds Light on Staggering Housing Challenges for Utah's Autistic Adults

By Kaigan Mears Bigler, KSL News, November 2, 2023

omewhere between 20% and 40% of Utah's homeless population has autism or another intellectual and developmental disability, according to the director of a project to help Utahns with autism.

The factors that contribute to such an astonishing statistic boil down to one thing: lack of support and housing accessibility for people with intellectual and developmental disabilities.

In 2021, the Madison House Autism Foundation conducted a needs assessment study involving Salt Lake Valley adults who have autism, and the study found that the No. 1 concern for these adults is housing. As a result, the foundation worked with partners "to understand what autistic individuals and their families need and want for future residential and support options," a report on the study said.

The report on both studies was discussed in the Utah Housing Coalition's November meeting on Wednesday, featuring Sumiko Martinez, the director of Madison House's Autism After 21 Utah Project; and Kristy Chambers, Columbus Community Center CEO and Utah Housing Coalition board member.

The Autism After 21 Utah Project was made "with the goal of building neuro-inclusive communities throughout the state of Utah, seeing if we can do that in an evidence-based way on a statewide basis and then creating a blueprint that other states can use if they want to come to the table and (make) communities more autism-friendly and friendly to people with intellectual and developmental disabilities," Martinez said.

The study report said approximately 191,000 adults in Utah have autism or intellectual and developmental disabilities. Of those adults, about 32,000 live with a caregiver above the age of 60. This means the risk posed to these individuals is a possible loss of home and care due to a caregiver's aging, illness or death.

Continued

Texas - Families Demand Answers after Two Men with Autism Died in Arlington Homes Run by the Same Company

By Tanya Eiserer, WFAA News, November 9, 2023   

The call came to Lisa Smith at 2:30 a.m. last September. 

“Is he breathing?” she asked. 

“No,” the person on the other line responded.  

In those predawn hours, they learned their 25-year-old autistic son had died in an Arlington group home.  

Seven months earlier, Karen and Teddy Robinson would also get a call. Visitors to the home their son, Joshua, lived in called to notify them that he’d been taken to the hospital. Doctors would tell them there was little they could do. He died a few days later. 

“If you put your loved one in a place like this, you expect them to be taken care of,” said Joshua’s stepmother, Karen Robinson. 

Joshua and Conner lived seven miles from each other in homes operated by the same company, EduCare Community Living Corp. – part of a network of homes across the United States. 

The state worker who investigated their deaths told WFAA that she believes that EduCare’s caretakers and medical staff didn’t pay attention to Joshua and Conner’s dire medical needs and that it led to their deaths.  

“If I had a person in there, I'd be afraid for them,” said Terry LaFon, a registered nurse with 30 years of experience.  

Joshua and Conner never met, but their lives took similar paths. 

Both died of similar causes. They both had autism. And as they got older, their families realized they could no longer care for them.  

“We didn't ever intend to put him in a group home. But when he became so destructive and aggressive, we were calling the cops every week,” Conner’s father, Bart Smith, said.  

Continued

Connecticut - Complaint Filed against Home for Autistic Children over “Torture”  

By Marc E. Fitch, Inside Investigator, November 7, 2023

The mother of a 14-year-old severely autistic girl has filed a complaint with the Commission on Human Rights and Opportunities (CHRO) alleging harassment and discrimination after the girl was forcibly held down by staff members who cut off a lock of her braided hair as punishment for acting out.

The mother, Nancy Camp of Stamford, wrote in the complaint that her daughter, Ava, was placed at Adelbrook Behavioral & Developmental Services, Inc., in Cromwell because she has an I.Q. of 50, suffers from Austism and Disruptive Mood Dysregulation Disorder and requires full-time, around the clock care.

On June 24, 2023, Ava was acting out, “displaying typical behavioral issues” associated with her disability, according to the complaint, when three staff members, including a supervisor, threatened to cut her newly braided hair if she didn’t stop. When Ava did not comply, two of the staff members held her down, while a third took scissors and cut some of her hair.

“Adelbrook Behavioral & Developmental Services, Inc. discriminated against my autistic daughter, Ava Font, by torture, in forcibly pinning her onto the ground and cutting off her hair, as a form of discipline, because she exhibited symptoms of her disabilities,” Camp wrote in the CHRO complaint. “Clearly, they knew better, but they tortured her anyway. This cannot stand in the State of Connecticut in the 21^st century, where this egregious form of torture constitutes discrimination in violation of both Connecticut General Law and the Fair Housing Act.”

The incident was witnessed by another Adelbrook employee who immediately reported it to his superiors. Adelbrook then informed Camp who contacted the police. 

According to the police report, two of the staff members involved in the incident were placed on leave by Adelbrook pending an internal investigation. The report states that the employee who actually cut Ava’s hair said she did so because the supervisor had threatened the child with cutting her hair, “so she believed she was supposed to do it.”

The police report also indicates the officer spoke with an investigator from the Department of Children and Families (DCF) who said that he was substantiating two allegations of emotional neglect for the two employees who held Ava down and one allegation of physical neglect for the employee who cut Ava’s hair.

The investigating officer reported back to Camp that DCF was substantiating the allegations and that Adelbrook would be disciplining the employees. Satisfied with those findings, Camp declined to press criminal charges.

However, according to the complaint and Camp’s attorney Andrew Lieb, Adelbrook only terminated one employee and Ava must now continue living and working with the two employees who participated in the incident.

“As a result, Ava now lives in a perpetual state of fear wherein she is forced to relive this harrowing ordeal every time that she encounters these individuals who have authority over her,” Camp wrote.

Continued

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

Please Click Here!

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

VOR SUPPORTS:

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.

VOR OPPOSES:

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.

VOR HAS SIGNIFICANT CONCERNS WITH:

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.

S.3118 - The HCBS Relief Act of 2023

Sen. Boby Casey (D-PA) A bill to provide for an emergency increase in Federal funding to State Medicaid programs for expenditures on home and community-based service. This bill, like others above, only provides funding for people receiving Long-Term Services and Supports through HCBS, denying any support for people in nursing homes or ICFs.

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!

VOR ❤️s OUR

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.

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]