April 30, 2021
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.

VOR promises to empower you to make and protect quality of life choices for individuals with developmental disabilities
VOR & YOU:
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VOR's 2021 Legislative Initiative
Your moment to
Speak Truth to Power!
VOR's Legislative Initiative Is Online This Year

Legislative Briefing - Sunday, May 16 - 4:00 pm, Eastern
Virtual Hill Visits - May 17 - 20
Online Debriefing Sessions - May 17 & 18 6:30 - 8:00 pm Eastern


Due to the pandemic, there will be no in-person meetings with Members and Congress or their staff on the Hill. We are encouraging our members to coordinate with others in their state to arrange meetings via Zoom, WebEx, Skype, FaceTime, or conference calls. We will provide the contact lists and let you know who in your state is participating. It will be up to you to coordinate with them and arrange your virtual meetings.

Part One: The Legislative Briefing
Sunday, May 16: 4-6 pm Eastern, 3-5 pm Central, 2-3 pm Mountain, 1-3 pm Pacific

The Sunday Briefing will explain in depth the issues that we wish to bring before our legislators this year. It will be followed by a Q&A, giving participants the opportunity to better understand our key points.

Part Two: Virtual Hill Visits
Monday - Thursday, May 17 - 20 - Virtual Meetings with Congressional Offices
We will try to make our presence known by concentrating our virtual meetings into a shortened time frame, much like during our in-person initiatives in the past when VOR members were meeting in offices in all six of the Legislative Office Buildings. If at all possible, please try to schedule meetings in the days that follow the Sunday Briefing.

Online Debriefing Sessions
Monday, May 17 & Tuesday, May 18  6:30 - 8:00 pm Eastern
There will be two online de-briefing sessions after each of the first two days’ meetings, to provide Q&A to help answer any questions that may have arisen and to help members follow up with anything that arises during their Hill visits.
You must be a current member of VOR to participate in this event, as the meetings with legislators and their aids will be conducted under the auspices of VOR.

VOR's Virtual Annual Meeting

Coming in June

New Date and Details To Be Announced!
National News:
This week, President Biden announced his $1.8 trillion American Families Plan. This, combined with his proposed American Jobs Plan and the recently passed American Rescue Plan signal major changes in policy toward people with Intellectual and Developmental Disabilities.

Congress is considering bills like the HCBS Access Act of 2021, which is still being formulated and has yet to be introduced, as well as the Raise the Wage Act and the Transformation to Competitive Integrated Employment Act, both of which would result in the closure of vocational centers (sheltered workshops) and the elimination of the 14(c) specialized wage that helps many people with I/DD to participate in meaningful employment.

These measures all continue to provide further funding and opportunity for some individuals with I/DD while marginalizing others and removing resources and opportunities on which they rely in order to live the fullest, happiest, and healthiest life possible.

VOR supports the idea that true person-centered planning begins with understanding the individual and providing choices based on their needs, not focused on ideologies. True person-centered planning can only happen when all options are supported and individuals and families are allowed to make fully informed choices.

In order for you to make your own informed choices, we present the White House's "Fact Sheets" on the American Jobs Plan and the American Rescue Plan, along with the House Republican Plan for Jobs and opinion pieces from the Washington Post and Forbes.

(These statements do not necessarily reflect the views of VOR)
High Turnover, Low Wages and Disparities Magnified During the Pandemic for Direct Support Professionals
University of Minnesota, Phys Org, April 28, 2021
New research from the University of Minnesota's Institute on Community Integration and the National Alliance for Direct Support Professionals provides insight on the impacts of the COVID-19 pandemic on the staff—called direct support professionals (DSPs)—who support people with intellectual and developmental disabilities (IDD). These staff assist with daily activities, employment supports and community engagement.

In the largest study of its kind in the United States, approximately 9,000 DSPs were surveyed from November 2020 to January 2021. Among the report's key findings:

  • Nearly half (47%) said they had been exposed to COVID-19 at work, with individuals in congregate facilities reporting more exposure than those working in individual or family homes.

  • 97% of workers self-identified as essential workers, but only 30% received salary augmentations.
  • Black/African American DSPs were paid less per hour than white DSPs, and a higher percentage of Black/African American DSPs worked 40 hours or more per week.

Researchers state that while the direct support workforce has been in crisis for years, the pandemic has exacerbated existing issues: high turnover and vacancy rates, low wages, and a lack of access to affordable benefits. More than half (54%) of respondents indicated their work life is getting worse. DSPs also reported that a significant number of the people with disabilities they supported experienced depression, behavior issues and loneliness during the pandemic.
State News:
Louisiana -
(L-R, Rep Rhonda Butler, Mary Kay Cowen, Kathy Dwyer and her daughter Jennifer Blanque testifying in the Louisiana House of Representatives)

VOR's Mary Kay Cowen established and chaired the Louisiana Dental Task Force, working with her state legislators to provide proper dental care for people with I/DD in her state.
(Rep Butler introduces the bill at begins at 41:53. Kathy Dwyer and Mary Kay Cowen's testimony begins at about 52:00)
Louisiana - Should Medicaid Cover Dental Care for Adults with Developmental Disabilities? Lawmakers Say Yes
By Blake Paterson, The Advocate, April 27, 2021
For adults with developmental and intellectual disabilities, preventive dental care is hard to come by. Few can afford the out-of-pocket expenses — and many end up with no teeth at all.

House Bill 172, sponsored by Rep. Rhonda Butler, R-Ville Platte, seeks to fix that by requiring Medicaid to cover routine dental care for those 21 and older with such disabilities. It sailed through the House Committee on Health and Welfare on Tuesday.

Under current law, Medicaid offers adults with disabilities limited coverage for tooth removals, dentures and hospital visits tied to dental emergencies.

Without routine check-ups, dental issues among disabled adults often go unnoticed. Verbalizing tooth pain can be difficult for those who are developmentally disabled.

The expansion would increase Medicaid expenditures by $17 million, with $11 million coming from the federal government — though Butler said that covering preventative dental care could save the program money in the long run.
One woman racked up $500,000 in hospital bills and had to get a lung removed after breathing in bacteria from an infected molar that went undetected, Butler said.

"They have to land in the hospital with a medical problem before Medicaid pays for it," Butler said. "If we start with preventative care, we don't land in those emergency rooms."

Mary Kay Cowen's brother Tommy is 62 years old but has the mental capability of a 12-month old and the motor skills of an 18-month old. A few years ago, his limbs began to swell, so doctors gave him antibiotics. Still, the source of the infection remained a mystery.

It wasn't until a rare dental visit months later that Cowen learned her brother needed a root canal. Once the tooth was pulled, the swelling subsided.
 
"Tommy couldn't tell us," Cowen said. "I can't imagine how long this man lived with that pain. I felt like I failed my brother, to be honest"

The measure is only the first step in improving dental care for disabled adults, advocates say. There's still a shortage of dentists and facilities that can provide the specialized care required.

HB172 would cover diagnostic, preventative and restorative dental and oral health services, as well as endodontics, periodontics, prosthodontics, oral and maxillofacial surgery, orthodontics and emergency care.  More than 10,000 adults with developmental and intellectual disabilities are enrolled in the waiver program that would be covered. 

The legislation does not include those adults who reside in intermediate care facilities, though a companion measure, House Continuing Resolution 34, asks the Department of Health to study how such a measure could be financed through the existing funding formula.
Iowa - One Housing Unit Closed at State-Run Facility for Intellectually Disabled
By O Kay Henderson, Radio Iowa, April 26, 2021

A house at the Glenwood Resource Center has been closed and the head of the state agency that oversees the facility says other units are being consolidated, to better manage staffing levels.

The facility that cares for patients with intellectual disabilities is Glenwood’s largest employer. Department of Human Resources director Kelly Garcia said her agency got extra money a year ago to hire more staff.
“Despite our best efforts, we were unable to fill a bit more than a dozen employees that are direct care workers,” Garcia said.

Eight patients were in the housing unit that closed. Garcia said one “transitioned to the community” and the other seven were transferred to Woodward Resource Center, the other state-run facility that cares full-time for patients with intellectual disabilities.

“That was planned for many months,” Garcia said, “and that was really to offset staffing levels at Glenwood that we have been unable to fill in the last year.”

“We don’t have any other closures and moved planned at this time, but we are constantly evaluating,” Garcia said. “We received our draft consent decree from the feds. I’m not able to share it. It is confidential in nature, but we are continuing to look at what our path forward looks like for Glenwood.”
New York - Schumer Announces Historic $35 Million Federal Investment To Build The Center for Discovery's Children's Specialty Hospital
From the Center for Discovery, PR Newswire, March 24, 2021

U.S. Senator Charles E. Schumer today announced an unprecedented $35 million loan for The Center for Discovery's (TCFD) first-of-its-kind Children's Specialty Hospital in Rock Hill, New York, through the U.S. Department of Agriculture (USDA) Office of Rural Development's Community Facilities Program. The funding will allow for New York's first short-term inpatient assessment program for children with complex conditions to begin construction, creating over 400 healthcare jobs and 150 construction jobs in Sullivan County while improving access to quality care and services for Upstate New York's most vulnerable.

Schumer explained that, through its groundbreaking research, the Children's Specialty Hospital, slated to break ground this June, will provide comprehensive, clinical assessments to diagnose underlying physiological, medical, and mental health problems. The hospital will create targeted treatments and interventions for children and adolescents to receive care that allows them to remain in their homes, saving the state millions each year by reducing the need for long-term residential care.

Furthermore, the senator said that the project will include an Education Academy to expand TCFD's existing programs with 853 special education schools. Construction supported by the USDA investment announced today will include new classrooms, accessible bathrooms, a full-service kitchen, dining hall, gymnasium, athletic fields, a traffic circulation system for school buses, and paved walking and biking paths for physical education and recreation. By building this critical infrastructure, TCFD will serve 60 additional students from surrounding communities while building on its preexisting relationships with 250 school districts. Schumer said that the new hospital will create a nationwide model transforming the standard of care for those with complex conditions right here in Upstate New York.
Oklahoma - Opinion: A Managed-Care System Would Hurt the State's Most Vulnerable
By Dena Drabek, The Oklahoman, April 25, 2021

Two years ago this month, I adopted my son Eli from DHS custody. Today, Eli and many other Oklahomans using the state’s Medicaid plan face uncertainty with the governor’s plan to privatize health care through a managed-care system. This change has prompted serious concerns that could mean the beginning of compromised health care for some of Oklahoma’s most vulnerable populations.

Eli was born prematurely with a congenital heart defect called tetralogy of Fallot with pulmonary atresia. He had already undergone his first heart surgery when I brought him home from the hospital at 1 month old. Since then, he has undergone another open-heart surgery and three heart catheterizations.

Thanks to postadoption support services offered with DHS adoptions, Eli is covered by SoonerCare, the state’s Medicaid program, which is operated by the Oklahoma Health Care Authority. This medical coverage is what made it possible for me to feel comfortable as a single working woman to adopt a child with health complexities.

Due to premature birth and his major surgeries, Eli has been delayed on many developmental milestones like crawling, walking and talking. He has been able to catch up and stay on track for his age, thanks to physical, occupational, speech and feeding therapies, all covered by SoonerCare.

We also have been fortunate to receive private-duty nursing to keep him healthy as he awaited surgery and procedures to mend his little heart. The service has also protected him from exposure to COVID-19 during the pandemic that has now spanned half of his young life.

Like most parents, I want to give my child the best possible chance in life, and that starts with being healthy. However, under a managed-care system, the outlook on future health care could change for Eli and thousands of other Oklahoma children who have been adopted or are still in DHS custody.

The governor’s plan takes Medicaid away from the state and puts private insurance companies in charge of patient care, with cost savings being the goal. The Health Care Authority's own actuarial adviser has said that to achieve that goal, Oklahoma would need to reduce services to Medicaid patients by up to 40%. These cuts almost certainly would involve a rationing of medically necessary care for patients like Eli. Not much is scarier to an adoptive mom like me.
Blogs:
Opinion: VOR's Jill Biden Comments on the Proposed Home and Community Based Services Access Act of 2021
By Jill Barker, the DD News Blog, April 27, 2021

The Home and Community Based Services Access Act of 2021 (HCBS Access Act) has been drafted for the purpose of seeking comments on various aspects of Mediciad-funded care and services. It would provide more funding to HCBS in community settings and eliminate waiting lists for services and much more, but, as always, the devil is in the details.
I'm good at finding devils in the details, a useful exercise when it appears you are being offered a bonanza of services and benefits, but in exchange, you are also being restricted from accessing benefits more appropriate for your disabled family member.

Dear [Representative Dingell, Senators Casey, Brown, Hassan, et al],

I am the mother of two adult sons, Danny Barker (age 44) and Ian Barker (age 36), who have profound, life-long intellectual and developmental disabilities (I/DD).

Danny has severe cerebral palsy, intractable seizures, reflux, a permanently dislocated hip, a feeding tube, and a severe visual impairment. He is unable to communicate in any specific way, although we know when he is feeling good and when he is not. He experiences frequent medical crises - in 2017, he was treated in the Emergency Department at the University of Michigan more than 15 times for seizures that would not stop and five times for aspiration pneumonia, for which he was hospitalized. He lives in a community group home with five other people with similar needs. Despite the severity of his disabilities, he is happy and content with his living situation and gets a great deal of love and attention in that setting.
Danny has severe cerebral palsy, intractable seizures, reflux, a permanently dislocated hip, a feeding tube, and a severe visual impairment. He is unable to communicate in any specific way, although we know when he is feeling good and when he is not. He experiences frequent medical crises - in 2017, he was treated in the Emergency Department at the University of Michigan more than 15 times for seizures that would not stop and five times for aspiration pneumonia, for which he was hospitalized. He lives in a community group home with five other people with similar needs. Despite the severity of his disabilities, he is happy and content with his living situation and gets a great deal of love and attention in that setting.
Ian had problems at birth similar to those of his brother. He also has profound intellectual and developmental disabilities, and, like Danny, he needs total care. He is unable to recognize dangerous situations, much less to protect himself from them. He shares a room with his brother in the same group home where they receive good care.

COMMENTS:
The continued availability of good care that is appropriate to my sons’ needs is precarious due to Michigan’s chronically underfunded mental health system and misdirected efforts that assume that full inclusion in “the community” is attainable and desired by all people with disabilities and their families. The failure to acknowledge the limitations of the full inclusion ideology and the reality that my sons will never attain the desired outcomes of independence and self-determination hamper efforts to improve their quality of life and the effectiveness of programs that serve their needs.
Coronavirus Updates:
Covid-19 Tracker:
More Than 1.13 Million People Have Gotten Vaccines Worldwide;
The U.S. has Administered 240 Million Doses

VOR Bill Watch:
Click on blue link to view information about the bill

VOR OPPOSES:

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 - This is the new version of the Transformation to Competitive Employment Act - It 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 such special certificates, and for other purposes
Home and Community Based Services Access Act of 2021

Representative Debbie Dingell (D-MI), Senator Bob Casey (D-PA), Senator Maggie Hassan (D-NH) and Senator Sherrod Brown (D-OH) have drafted a new bill, the Home- and Community-Based Services Access Act of 2021. The bill was written with input from the Arc and possibly other like-minded organizations, and contains provisions to increase federal support of HCBS settings eliminate waiting lists for services, and alter the landscape of services for people with I/DD. The Bill has not yet been introduced. The sponsors have opened a forum for comments from stakeholders until April 26, 2021.

VOR is at work on a response to this bill and we will keep our members posted as to our comments and how you, as stakeholders, may get involved when the time comes.
VOR SUPPORTS:

At this writing, there have been no bills entered in the 117th Congress that support a full continuum of care, protect employment options that rely on 14(c) wage certificates,
or advance the interests of Direct Support Professionals.
Please stay tuned.
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 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


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?

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