August 2, 2024

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.

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VOR & You:

Note: For the past few decades, VOR has advocated for the rights of all people with intellectual disabilities and autism. We have consistently spoken on behalf of families whose loved ones with severe or profound ID/A, those who don't always fit into the policies and ideologies of the agencies that have been created to provide and oversee the programs, facilities, and opportunities that meet both their needs and their aspirations. We have tried to work with these agencies to ensure that our folks are represented in all of their platforms and that they won't be marginalized by the good intentions of those who promote inclusion.


A few weeks ago, the Administration for Community Living, the HHS Office of Civil Rights, the DOJ Office of Civil Rights, the Dept of Labor's Office of Disability Employment Policy, and representatives from the National Disability Rights Network all participated in a presentation celebrating the 25th Anniversary of Olmstead. For those who missed the event, the ACL has released the full video on YouTube.


While we do certainly acknowledge the strides that have been made for so many in the past 25 years, we cannot help being dismayed, and disappointed, that no mention has been made of those with severe/profound ID/A. While they acknowledge us in face to face meetings, they continue to act as though our family members do not exist - or are not worth mentioning in a public display of their work on behalf of people with I/DD and autism.


Click here to watch the video of the ACL's 25th Anniversary of Olmstead


Click here to link to the ACL's web page of the event.


Click here to donate to VOR,

and help us continue to give a voice to those who cannot speak for themselves.

From the Federal Register - Request for Comments on Possible Revision of Standard Occupational Classification for Direct Support Professionals for 2028


The Office of Management and Budget (OMB), on behalf of the Standard Occupational Classification Policy Committee (SOCPC), announces the review of the 2018 Standard Occupational Classification (SOC) Manual for potential revisions to be made for 2028 and solicits public comment. This review and possible revision of the 2018 SOC is intended to be completed by the beginning of 2027 and then released to begin use in reference year 2028.


While they did not specifically request information regarding Direct Support Professionals, we hope that our members will speak out in support of recognizing our caregivers and awarding them the classification of Health Care Professionals. Comments are due soon.


For more information, and to submit a comment, please click here.

Related Story:

Disability Service Providers Advocate for New Wage Rules in 2028

KJZZ | By Kirsten Dorman, KJZZ Phoenix News, July 27, 2024


Rights advocates are hoping that a new classification for disability service providers will end the decades-long workforce crisis they’ve been facing.


Sometimes, states will blend parts of different codes to create a DSP wage that’s less than accurate and not enough, with record numbers leaving for other entry-level jobs.


How direct support professionals are paid is determined by Standard Occupational Codes, which the federal government uses to identify different occupations and things like wage trends.


DSPs don’t have their own code and instead often rely on states to borrow and blend parts of other occupations’ codes to set their wages.


Revisions only happen every 10 years, and the federal government is now considering changes for the new 2028 manual.


Read the article here

This Week's News:

Overtime Mandate Has Disability Providers Considering Service Cuts, Advocates Say

By Michelle Diament, Disability Scoop, August 2, 2024


Millions more workers will soon qualify for overtime pay and advocates are warning that the changes are likely to further erode the availability of developmental disability services.


The U.S. Department of Labor started incrementally increasing the salary threshold at which employees are eligible for overtime pay under a new rule that took effect this summer.


As of July 1, most salaried workers earning less than $43,888 qualify for overtime if they work more than 40 hours in a week. That limit will grow to $58,656 in January and it will update every three years based on wage data beginning in July 2027.


The changes, which the Labor Department estimates will affect over 4 million workers in the first year, are putting disability service providers in a particularly tough spot, advocates say. That’s because providers rely on funding from Medicaid and they have no way to pay their employees more if reimbursement rates aren’t adjusted.


“With 60% of community-based providers already considering additional program closures and 77% of providers turning away new referrals before the overtime rule went into effect, we are extremely concerned about impacts to access as providers unable to shoulder additional unfunded expenses close programs and shutter services,” said Lydia Dawson, vice president of government relations at the American Network of Community Options and Resources, or ANCOR, which represents 2,100 disability service providers across the nation. “Given the fragility of the community-based service system, increasing the cost of delivering services without also ensuring sufficient and commensurate Medicaid funding will undoubtedly further reduce access to services for people with IDD.”


Last year, ANCOR released a report estimating that the higher threshold for overtime pay would yield an extra $1 billion in expenses for disability service providers in the first year. In a survey of more than 700 providers from 45 states that was included in the report, a third said they would have to eliminate positions, almost half said they would limit overtime and 61% indicated that they would shift salaried employees to hourly.


While the initial increase that took effect in July concerned providers, advocates say they are especially wary of the next hike coming in January.


“As our members work through their budget process for next year, we are hearing that community-based providers are considering additional program and service closures in order to comply with the January increase. Because state funding for Medicaid services is appropriated through state budgets, there is little to no opportunity to request funding to meet the new costs prior to the implementation date,” Dawson said.


Continued

State News:

Massachusetts - DDS finally Acknowledges it Doesn’t Keep Track of Vacancies in State-operated Group Homes

By David Kassel, The COFAR Blog, July 30, 2024


For almost a year, we had been trying to clarify with the Department of Developmental Services (DDS) whether there are – and we suspect there are – continuing vacancies in the Department’s network of state-operated group homes.


Finally, in a clarification issued earlier this month in an appeal we filed with the state public records supervisor, a DDS attorney stated flatly that, “DDS does not track state-operated group home vacancies.”

While it’s helpful to know it would be a waste of time to continue to ask DDS for information it clearly says it doesn’t have, the Department’s clarification still raises a number of questions. First, why doesn’t DDS track what appears to be basic information about its state-operated group home network?


Secondly, even though thousands of people with intellectual and developmental disabilities are waiting for residential placements and other services from DDS, why would the Department not have any interest in knowing whether its state-run network has available beds for them?


One troubling answer to those questions is that the Healey administration does not view state-run residential services as a viable option for those thousands of waiting clients. This is borne out by evidence that DDS is letting the state-run system die by attrition.


DDS does not generally inform people seeking residential placements of the existence either of its network of state-run group homes or of its two remaining state-run congregate residential centers – the Wrentham Developmental Center and the Hogan Regional Center. Instead, the Department directs those people to its much larger network of state-funded group homes that are run by corporate providers.


In many cases, families have told us that when they have asked about placements in state-operated group homes, DDS has stated that there are no vacancies in such homes in their area. That is despite the now-apparent fact that DDS doesn’t actually know whether there are vacancies or not.


Continued

Massachusetts - Healey Targets State-operated Group Homes for Cut in Proposed FY ’25 Funding

By David Kassel, The COFAR Blog, July 31, 2024


In signing a $58 billion state budget this week for the newly begun Fiscal Year 2025, Governor Maura Healey has cut $401,000 in proposed funding for state-operated group homes.


That was one of two cuts that Healey made in Department of Developmental Services (DDS) line items in the budget plan sent to her by the Legislature. The governor also cut $1 million in proposed funding for the Autism Division.


Left untouched by Healey was $1.69 billion in funding for DDS’s separate corporate provider-run group home line item, and $390 million in a separate reserve fund for the providers.


Healey’s cut in proposed funding for the state-operated group homes still allows for a 4% increase in the funding of that line item over the previous fiscal year. But that increase will now be $2.4 million less than the increase the governor herself had proposed when she submitted her budget to the Legislature in January.


The Legislature itself had cut Healey’s proposed funding of the state-operated group homes by $2 million. Healey has now reduced that amount by an additional $401,385.


It’s unclear what the impact will be of the lowered funding increase for the state-run homes and whether it might result in cuts in staffing. It is also unclear why Healey targeted just the state-operated group homes and the Autism Division for cuts out of DDS’s total $2.9 billion budget.


Healey stated with regard to the state-operated group home line item cut that she was reducing it to $330.7 million, which is “the amount projected to be necessary.” In signing the budget, she said that, “Due to operational efficiencies, savings will be achieved (in state-operated group homes) without impacting services to clients.”


Healey’s statement, however, did not specify what those operational efficiencies were.


Continued

Rep. Charlie Meier Receives National VOICE Award from A Voice of Reason

By the staff of the Metro East Sun, July 29, 2024


Illinois State Representative Charlie Meier has been awarded the 2024 VOICE Award by A Voice of Reason (VOR). The VOICE Award is presented annually to one individual in the nation. Established in 1983 by families of individuals with intellectual and developmental disabilities (I/DD), VOR is a grassroots advocacy group dedicated to promoting a comprehensive range of care options for people with intellectual disabilities and their families.

Meier has a history of advocating for individuals with developmental disabilities and their families. Since taking office in 2013, he has focused on ensuring safety and quality care for those in state-run or state-supported behavioral and mental health facilities, as well as Community-Integrated Living Arrangements (CILAs), commonly known as group homes.


In May, Rep. Meier led an effort to amend legislation to build stronger protections and strict penalties for so-called ‘bad CILAs’. SB 3753 mandates that Service and Developmental Centers (SODCs) and CILAs with contracts with the State of Illinois must establish an annual review process to ensure residents' needs are adequately addressed. Additionally, the bill grants the Department of Human Services authority to implement progressive penalties for providers who do not adhere to their contractual obligations with the state. According to Meier, these penalties could include stopping payments, halting new admissions, revoking certifications, and rescinding licenses for non-compliant CILAs. SB 3753 passed both houses unanimously and awaits the Governor’s signature.


“I’ll always fight for our intellectually and developmentally disabled,” continued Meier. “We have much work to do, and when we go back to Springfield, I know that I have a great partner in A Voice of Reason. I do not do this for recognition, but it certainly is a wonderful feeling to be appreciated. Thank you to the committee and everyone involved in the selection process for this honor.”


Read the article here

New Jersey - NJ Human Services and Office of Innovation Launch Disability Information Hub      

Press release from the State of New Jersey, July 26, 2024


Human Services Commissioner Sarah Adelman and State Chief Innovation Officer Dave Cole today launched a Disability Information Hub website during a virtual event commemorating Disability Pride Month and the 34th anniversary of the Americans with Disabilities Act (ADA Day). The Hub, located at NJ.gov/Disabilities, will serve as a one-stop shop to connect New Jerseyans with disabilities, their families, caregivers, and advocates with state services and resources in an accessible format. The Hub and related referral services are among Fiscal Year 2025 investments to support inclusion and services for New Jersey’s diverse disability community.


“Across state government, our Administration has pursued equity and inclusion for individuals with disabilities, improved access to services, and strengthened supports for this community. For many individuals and families, New Jersey’s Disability Information Hub will be a game-changer. Having streamlined, easy access to the State’s comprehensive collection of services and supports will put needed tools and resources in reach for countless people,” said Governor Phil Murphy. “Together, we are breaking down barriers and empowering all New Jerseyans to thrive in their communities. I commend the whole-of-government effort to uplift the State’s disability community.”


           “The anniversary of the Americans with Disabilities Act marks significant progress in protecting civil rights and promoting the full inclusion and dignity of people with disabilities. Under the Murphy Administration, Human Services has made substantial investments to better serve and support individuals with disabilities and their families,” said DHS Commissioner Sarah Adelman. “The Disability Information Hub is a gateway to a wealth of resources available to this community. We are proud to launch this comprehensive and accessible resource, especially during Disability Pride Month, and could not have done so without the dedicated work of the Office of Innovation and Office of Information Technology, as well as the many individuals with disabilities and fellow state agencies and offices who helped test and improve the website.”


           “Human-centered government services build trust and lift up communities across New Jersey. The Disability Information Hub represents the insights of dozens of community-based service providers, families, caregivers, and New Jerseyans with disabilities.” said New Jersey State Chief Innovation Officer Dave Cole. “Working with the dedicated team at DHS and partners across the state, we developed this new website as a living resource that was designed with — not just for — those in the broader disability community. I thank Commissioner Adelman and her team, our colleagues at the Office of Information Technology, and the dozens of other partners who contributed.


Continued


VOR would like to commend the State of New Jersey for making information so readily available with a thorough website augmented by a dial-in information line,. We hope other states will follow this model.

West Virginia - Funding for People with Disabilities Still in Limbo Despite May Special Session Focus

By Amelia Ferrell Kinsely, West Virginiia Watch, July 26, 2024


State funding for people with disabilities remains in limbo despite lawmakers passing a bill during the May special legislative session meant to bolster the line item.


On Thursday, Gov. Jim Justice indicated the funding could be restored later this year. 

The state’s waiver program helps adults and children with intellectual and developmental disabilities (known as IDD) receive in-home help to safely shower, eat and more. 


“Families are still concerned, and we’re feeling a little defeated,” said Christy Black, advocacy specialist for the West Virginia Developmental Disabilities Council. “These really are our most vulnerable people, and people who don’t have a voice for themselves.”


Lawmakers slashed millions of dollars for IDD funding in March as they tried to trim the state budget amid a potential federal clawback of dollars. 


In response, Justice called lawmakers back to Charleston in May specifically to address the funding gap.

The bill, which followed a tense standoff between the House of Delegates and Senate, didn’t require the Department of Human Services to spend roughly $180 million on its waiver program for people with intellectual or developmental disabilities.


Instead, it put the money in a reserve for department leaders to dip into for limited reasons when needed. 


 “You’ve just gotta stay tuned a little bit longer,” Justice said in response to a question from West Virginia Watch during a press conference. “I think you’ll see some new news come out in regards to IDD and funding for folks [who] are very, very deserving.”


Disability advocates and many lawmakers — particularly in the House of Delegates — hoped that DoHS would use its funds to increase the Medicaid reimbursement rate.


The state uses state and federal money from Medicaid to reimburse private companies that employ direct care workers, including those who help individuals with disabilities or elderly residents.


Care workers now earn around $11 an hour, and West Virginia’s reimbursement rate is well below other states. 


A 2023 survey by the health department — paid for by state dollars — said West Virginia needed to increase its rate of reimbursement and the worker salary range to $15.50-$18.60 per hour.


Companies that staff in-home workers have told state leaders that they won’t be able to remain in business due to the state’s low Medicaid reimbursement rate. 


There’s already a worker shortage, which has resulted in more people with disabilities ending up in psychiatric care facilities. Facilities can cost the state hundreds of dollars more per patient than in-home care or a community placement.


Lawmakers are expected to gather in August for another special session this year. Justice has indicated he’d like the Republican-led Legislature to implement further cuts to the state’s personal income tax and consider his plan for a child-care tax credit. 


Read the full article here

West Virginia - People With Intellectual, Developmental Disabilities To Get Help

By Emily Rice, WV Public Broadcasting, July 30, 2024


West Virginia has a new central point of contact to address opportunities for, and barriers to service, for individuals with intellectual and developmental disabilities in the state. 


On Monday, the Department of Human Services (DoHS) announced the hiring of West Virginia’s first statewide Intellectual and Developmental Disability (IDD), Coordinator, Susan File.


“I am honored to take on this role and look forward to working with the community, providers, and stakeholders to improve and expand services for individuals with intellectual and developmental disabilities in West Virginia,” File said.


File previously served as the behavioral health program manager for the Office of Inspector General.

In that role, File oversaw all state-licensed behavioral health facilities and acted as a liaison between the Office of Health Facility Licensure and Certification (OHFLAC) and DoHS’s Bureau for Medical Services (BMS) and other bureaus.


File has a bachelor’s degree in psychology from West Virginia State University and most recently served as the president of File Consulting, LLC, a consulting business focused on behavioral health and improving quality assurance and compliance for agencies. 


She was also the executive director of a privately owned, non-profit licensed behavioral health center.

As West Virginia’s IDD Coordinator, File will lead a new project for community engagement specialists tailored to IDD to facilitate community discharge placements.


File will report to Christina Mullins, DoHS Deputy Secretary for Mental Health and Substance Use Disorders, in the Office of the Cabinet Secretary.


Continued


Click here to read the press release from the WV Dept. of Human Services

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.

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