June 21, 2024

This is the first part of a two-part newsletter this week.


Part 2 will be sent out tomorrow.

VOR's Weekly News Update

VOR is a national non-profit organization

run by families of people with I/DD and autism

for families of people with I/DD and autism.

Follow us on Facebook
Watch us On YouTube
www.vor.net
Click here to Join VOR or Renew your Membership

VOR & YOU:

Please submit your state reports for


VOR's 2024 Annual Meeting


Sunday, June 23, 2024

3 pm - 6 pm ET / 2 pm - 5 pm CT / 1 pm - 4 pm MT / Noon - 3 pm PT


3 pm - VOR's Annual Members Meeting


Please click here for a link to the Zoom Meeting


An open meeting of the VOR Board of Directors,

discussing the state of our organization and the direction of our advocacy work.

We will announce the outcome of the voting for directors,

present the 2024 VOICE Award,

and introduce

URSULA

The 2024 VOR Teddy Bear


4 pm - Guest Speakers


Joe Macbeth - President, National Association of Direct Support Professionals will share his insights on the workforce and their perspectives on caregiving, the need for safety, security, better training, and a career path,

and how VOR members can advocate to rebuild the DSP workforce.


Jackie Kancir - National Policy Director of the National Council on Severe Autism, Jackie is the mother of a young woman diagnosed with SYNGAP1, an outspoken advocate for severe autism, a frequent blogger at "What We Need Yesterday",

and the co-proprietor (with her daughter Jadyne) of Bunny Egg Acres.


5 pm - Reports from the States


VOR members will update one another on the state of I/DD and autism services in their states. Please join us for this yearly event.

State Reports that have been submitted will be available

on our website, at www.vor.net


We encourage members to submit their state reports to us at info@vor.net


Registration is requested, but not required.

To register, please click here


Please click here for a link to the Zoom Meeting


The 25th Anniversary of Olmstead:

Notes on the ACL / DOJ / HHS-OCR

Celebration of the 25th Anniversary of Olmstead Event


June 22, 2024 will be the 25th Anniversary of the Supreme Court's Decision in Olmstead v. L.C. On Thursday, June 20th, an event celebrating that anniversary was held in the Great Hall of the Department of Justice, produced jointly by the Administration for Community Living, the Department of Justice, and the Office of Civil Rights of the Department of Health and Human Services.


VOR's Hugo Dwyer and Gayle Gerdes attended the event, and we were both awed by the presentation. We would like to acknowledge the successes highlighted by the members of the sponsoring organizations, and would especially like to congratulate the featured guests, Garrett Frey, Diana Vila, Jusitn Duvall and Sharon Ledford, Jenny and James McClelland, and Theo Brady, for their persistence and hard work in achieving their goals and in attaining the levels of service they need to live their best lives. Each of these people worked for years through their state's disability services system as well as through ACL, DOJ or HHS/OCR in order to achieve this level of care, and they deserve our praise.


At times, the event seemed surreal. The optimism displayed by the leaders of these various agencies was contagious throughout the hall. For a few brief moments, itt almost appeared as though these three agencies were on the cusp of fixing the system.


Sadly, that is not the reality of many families who struggle to find care for their loved ones with I/DD and autism. As encouraging as these individual success stories are, these stories were the exception, not the norm. It felt a little like watching the people who sponsor PowerBall present the stories of people who had won the lottery, in order to give hope to those who continue to try to win each week.


VOR has members from all across the country who need to receive the same services that had been spoken of during the event. And our families have fought just as hard to receive those services. And there are thousands of other families who haven't the same resources, or the time to reach out to those who mete out these services, who are just as deserving. We have a long way to go.


Much like the meeting of the President's Committee for People with Intellectual Disabilities, there was no mention of the thousands of people whose needs are not addressed by Home- and Community-Based Services. Olmstead was referred to as an integration mandate, not a mandate for Choice. And Choice itself, seemed to be the right to choose only one thing - living in the community and integrating with non-disabled people. That's one choice, but having only one choice is not much better than having no choice at all. Real choice means having the right to choose what is right for you, or your family, from a full range of services and employment opportunities. Real choice means respecting the choices that others make, even if they are not the choices that you would make.


It's been 25 years since the Olmstead Decision. We've made a lot of progress. We've made a lot of mistakes. And we have a long, long way to go.


Note: The event live-streamed on the 20th. It's likely that the ACL will have the video of the event posted on their website in the next week or two. Go to acl.gov and search for Olmstead 25 to see when they put it up.

VOR Meets with the Department of Justice


Right after the joint presentation of the 25th Anniversary of Olmstead, VOR's Hugo Dwyer, Gayle Gerdes, and Peter Kinzler (via Zoom) met with members of the Office of Civil Rights of the Department of Justice. our goal was to find common ground. DOJ has been especially active in the last few days, possibly in a showing of faith to the anniversary or Olmstead, or possibly in support of the administrations policies of inclusion. Or possibly, just coincidentally.


In the past, DOJ has initiated actions aimed at "Olmstead Enforcement", or making sure that states were providing sufficient services in Home- and Community-Based Services (HCBS). Unfortunately, the outcomes that arose from DOJ's actions have often resulted in states using this as opportunities


When we spoke yesterday, we discussed how the outcomes of their investigations have often resulted in closing of intermediate care facilities for people on the more severe/profound end of the scale, while having only a minimal effect on increasing HCBS services. They understand that, and even regret many of these outcomes. Their argument is that states are often just waiting to get rid of SOICFs or sheltered workshops, but to do so would be a sensitive issue, so they capitalize on the DOJ's actions as a means to get rid of them. 


We emphasized that they are eroding what’s left of the safety net for our folks, without providing new alternatives. We stated our view that as the DD system has privatized, it has increasingly been subject to the what economists call the “Invisible Hand of the Market” - in other words, providers can determine what facilities to build and where, which cohorts of clients to serve, and what level of staffing will be required. That rarely results in the creation of HCBS services designed for people with more severe I/DD and autism. 


DOJ members pointed out that in the wake of the closing of Iowa’s Glenwood Resource Center, private providers did create more group homes designed for people requiring higher levels of care. We pointed out that this was an exceptional case, where the state had multiple people they desperately needed to place in new facilities, so they offered "provider fairs" where families met online with providers to see which client could be matched with which provider. The result was that the providers again were able to pick which people they chose to serve and where. They built new group homes where it was convenient for them to administer, not where the individuals and their families live.


However, we all agreed we were disappointed by the Iowa DHHS' closure. For one thing, they chose a day, June 30th, 2024 - the end of the state's fiscal year, as the date for closing - ready or not. They should have prioritized ensuring appropriate placements for the residents, not a date that was convenient to the administration. As a result, it appears that many of the placements do not meet the needs of the individuals or choices of their families. (See article below)


We also spoke about the DOJ's action in Utah, claiming the state was putting too many people into sheltered workshops and day programs. We argued that sheltered workshops are voluntary programs, that they provide services for people who are unlikely to be able to be accommodated by companies that do want to provide competitive integrated employment (CIE), and that day programs are valuable to those who are most profoundly impacted with I/DD and autism. We agreed that there should be more programs for those who seek CIE, but that requires stimulating the private sector (again, that "invisible hand") and not taking away services. The important thing is that all people with I/DD and autism are able to engage in programs that provide meaningful daily activities appropriate to their skills and aspirations, to improve the quality of their lives. We hope to continue this conversation in the near future.


Overall, we tried to change the tone of this meeting with DOJ, as we have with other meetings with people and agencies that oversee services for people with disabilities, to be one where we can find common ground, demonstrate that while we respect the needs of those who aspire to integrate into the non-disabled community, we want equal respect for those at the other end of the spectrum whose existential needs are paramount. We are trying to get away from confrontational encounters that produce no good results (and we have had some disastrously confrontational meetings in the past) and move towards increasing understanding and trying to make the Disability System work better for everyone.


We appreciate the time that DOJ gave us, as well as the time that we shared with members of the ACL, HHS Office of Civil Rights, the Senate's Office of Aging and Disability Policy, The Department of Labor's Office of Disability Policy, and others we have met with in the course of the last two months. We hope that these discussions lead to a better understanding of what Choice means, and lead to better cooperation between people everywhere on the disability spectrum.

Overall, it appears that DOJ is suing states for not forcing the private sector to create residential services and employment opportunities, despite the fact that there are too few Direct Support Professionals to staff the residences due to low pay and no benefits, and too few private sector employers willing to provide jobs with competitive wages to people with intellectual disabilities whose productivity may or may not be competitive.


Is it DOJ's fault, or the fault of the system we have built? Is this a measure of how far we have come in the 25 years following Olmstead?


Okay, enough with the editorializing. And now, the news.

Recent DOJ Actions:

Iowa - Top DHHS Official says State is On Track to Close Glenwood by the End of the Month

By Natalie Krebs, Iowa Public Radio, June 18, 2024   


On June 30, the state will close the Glenwood Resource Center, a state-run facility for Iowans with severe disabilities. It's faced significant challenges and controversies in recent years, including several Department of Justice investigations into the care of its residents.


IPR’s health reporter Natalie Krebs spoke with Iowa Department of Health and Human Services Director Kelly Garcia about Glenwood’s upcoming closure. Here are some highlights:


When Gov. Kim Reynolds announced Glenwood was closing two years ago, the facility had 152 residents, according to records from Iowa HHS.


As of this week, just six residents remain, and they should be moved out by the end of the week, Garcia said.


Some "medically fragile" residents were moved to Woodward Resource Center, the state’s other facility for severely disabled Iowans, while others were moved into services like group homes, nursing homes, host homes, even hospice care, she said.


Iowa DHHS records show:

  • 26 residents were moved to Woodward
  • 83 were moved to home and community-based services
  • 8 residents went to immediate care facilities
  • 7 residents went to home and community-based services in host homes
  • 6 residents went to a nursing home
  • 7 residents went to hospice
  • 5 residents have died at Glenwood since the closure was announced


As of May 22, six residents had initial placements that "failed," with four residents returning to Glenwood and two residents going directly to other placements.


Fourteen Glenwood residents who transitioned out of the facility died within a year after moving. Causes of death included "cancer, respiratory conditions, cardiac arrest as well as cardiac conditions," according to HHS documents.


  • 5 residents died in hospice care that they directly went to from Glenwood
  • 6 residents died in hospice care after going into community care
  • 3 residents died in community care without going into hospice


As for staff, Garcia said the approximately 200 current employees will remain on staff until the final closure date of June 30.


"There's still work to do, though, in terms of the operations," she said. "It's a large campus. There's a lot of work that we need to do to transition the equipment and all of the furniture out of the actual facility."

Iowa HHS will retain just about 25 people starting in July in order to maintain the 380-acre campus, according to Garcia. 


However, the state is working with staff members who are getting laid off to help find them other jobs, she said.


Read the full article here

Missouri is Putting People in Nursing Homes Who Don't Belong There, DOJ Says

By John Murphy, KOMY 8, June 20, 2024


After an 18-month investigation, the U.S. Department of Justice has determined the state of Missouri is violating the Americans with Disabilities Act by unnecessarily institutionalizing adults with mental health disabilities in nursing homes.


The department said in its Tuesday report that Missouri is failing to provide community-based services for these people. 


Supportive community-based services include assertive community treatment, case management, supported employment, mobile crisis response, crisis stabilization services, permanent supportive housing, peer support and supported decision-making, according to the report.

The Justice Department alleges Missouri is violating Title II of the ADA.


“People with mental health disabilities should not have to be confined to a nursing facility because they cannot access the community-based services they need," Kristin Clarke, the assistant attorney general of the Justice Department's Civil Rights Division, said in a news release. 


Nearly half of these people unnecessarily placed in nursing facilities are under the age of 65, the investigation found.


"Most require little or no assistance with basic physical activities and simply don't need skilled nursing care," Clarke said in a video posted to the Department of Justice's website. 


Continued


Read the DOJ Statement here

DOJ says Utah Violates Civil Rights by 'Segregating' Adults with Intellectual Disabilities

By Bridger Beal-Cvetko, KSL June 18, 2024


Utah is in violation of the Americans with Disabilities Act by "segregating" adults with intellectual and developmental disabilities in jobs that offer limited interaction and giving them "little choice in how to spend their time," according to a report from the U.S. Department of Justice.


The findings, announced Tuesday, follow an investigation into three state agencies that coordinate services for the population: the Department of Workforce Services' State Office of Rehabilitation, the Department of Health and Human Services' Division of Services for People with Disabilities and the Utah State Board of Education.


In a letter to Gov. Spencer Cox, Kristen Clarke, an assistant attorney general with the department's Civil Rights Division, claims the state fails to coordinate services between the various agencies, resulting in adults or youth with disabilities primarily being provided segregated employment.


The Justice Department cites the Supreme Court decision in Olmstead v. L.C., arguing services for people with disabilities should be made available "in the most integrated setting appropriate to each person's needs." It said typical recipients of integrated services work in retail stores, offices and restaurants, and they "interact with people of all abilities."


"Full inclusion in society is a central promise of the ADA," Clarke said in a statement. "People with intellectual and developmental disabilities are entitled to full inclusion, and to the dignity and purpose that comes with deciding where to work and how to spend their days."


Katie England, a spokeswoman for the Utah Department of Health and Human Services, said the agency worked closely with the Justice Department throughout the investigation and promised to continue working with the department "on next steps."


She said the state agrees that integration into communities and employment is the best approach and Utah is "committed to creating a support system where people with disabilities are integral parts of our communities and can thrive." England said the state is working toward that goal by training providers "about how to best center the person's needs" when making decisions about employment and other things.


Read the full article here

Sidebar: Utah isn't Luxembourg, but here's an example of how to balance employment opportunities to meet the needs of all people with I/DD who seek meaningful employment opportunities.

Over 7,000 Employees with Disabilities Working in Luxembourg

By Simone Molitor, Luxembourg Times, June 18, 2024


One in three of the more than 7,000 recognised disabled employees in Luxembourg suffer from a chronic illness as their main impairment, a study presented by the Ministry of Labour on Monday concluded.


A total of 7,227 workers or jobseekers were recognised as disabled employee in Luxembourg as of December 2023. They suffer from a reduction in work capacity of at least 30%.


Being recognised as a disabled employee, a status that was only introduced in 2003, entitles workers to additional support facilitating access to employment.


The 60% employment rate of disabled workers in Luxembourg is above the EU average. More than one in three (36%) are employed in the primary labour market. A further 1,810 people recognised as disabled employees are registered with Adem as jobseekers. 607 people are neither employed nor looking for work.


Of those recognised as disabled, 24% are affected by a mental illness, 18% have a physical disability, 18% suffer from a chronic mental illness and 32% have a chronic illness. “This could be multiple sclerosis, anything that falls into the category of ‘rare diseases’, dementia or Parkinson’s disease. These are all invisible disabilities. The fact that they predominate was one of the major findings of the study. Disability is not necessarily trisomy or a wheelchair user,” said Mousset. 


Other figures from the study show that 63% of disabled employees are men and 37% are women. More than one in two is over 45 years old. Almost all - 95% - have a permanent employment contract and 69% work full-time. Over a third, 39%, work in the private sector, while 31% are employed in the public sector and 29% are in sheltered workshops.


“The study provides an opportunity to dispel the stigma that disabled people cannot find work or cannot work. This is clearly not true,” said Minister of Labour Georges Mischo.


“Work is an essential key to inclusion and social participation. Working means belonging, getting involved, socialising. Everyone deserves the chance to do this. It’s not just about doing 20 or 40 hours a week in a particular job,” he added.


Read the full article here

National and State News:

As stated at the top of this week's newsletter, there's too much news this week to fit into a single edition. I will send out the rest tomorrow..


Tonight, I'm taking my wife out to dance.

VOR Bill Watch:

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


VOR SUPPORTS:



S.4120 / H.R.,7994 - The Long-term Care Workforce Support Act - This bill would increase FMAP and offer grants to all DSPs and caregivers for the elderly and for people with I/DD and autism. VOR worked with members of the Senate Aging and Diability Policy Committee and other peer organizations to improve this bill from its original form. It is not perfect, and it contains one major flaw to which we continue to object (the permanent reauthorization of the Money Follows the Person Rebalancing Demonstration Program) but we will continue to work to improve this bill and remove its flaws.


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.7267 - Disability Community Act of 2023 To amend title XIX of the Social Security Act to provide a temporary higher Federal medical assistance percentage for Federal expenditures under the Medicaid program that are associated with the cost of compliance with certain Federal regulations with respect to services furnished in certain intermediate care facilities or home and community-based services furnished to individuals with intellectual and developmental 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.


S.7302 - The Credit for Caregiving Act of 2024 Sen. Michael Bennett (D-CO) This bill would amend the Internal Revenue Code of 1986 to provide a nonrefundable credit for working family caregivers. In the case of an eligible caregiver, there shall be allowed as a credit against the tax imposed by this chapter for the taxable year an amount equal to 30 percent of the qualified expenses paid by the taxpayer during the taxable year to the extent that such expenses exceed $2,000. The tax credit is not to exceed $5,000 per year.


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.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:


H.R.8109 - To Make Permanent the Money Follows the Person Rebalancing Demonstration Program. MFP has been used to erode the ICF system. We call for congressional hearings, studies by the GAO, and audits by the Congressional Budget Office before any action should be taken to reauthorize this program.


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.1193 / H.R.2708 - The Latonya Reeves Freedom Act of 2023

Sen. Michael Bennett (D-CO) / Rep. Steve Cohen (D-TN) Allegedly written and strongly supported by ADAPt and other self-advocacy groups, this is a watered-down version of the Disability Integration Act. It is strongly biased against care in larger congregate facilities, and falls just short of seeking the elimination of ICFs.



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


info@vor.net


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 info@vor.net


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