December 2, 2022

Our 2022 Year-End Fundraising Campaign

Like many other non-profit organizations, VOR relies on contributions from members and friends to remain viable. And we are now in the make-or-break period.

Most of our contributions are posted during the month of December.

This year we have set a pretty high goal for our fundraising.

We are aiming at raising $100,000.

We would like to increase our membership by adding 100 new families.

We are asking our members to reach a little further this year.

We understand all too well that times are hard, that prices have risen, and that there are other worthy non-profits out there appealing to your generosity.

We believe that we occupy a very special place in this world.

We speak for those who have no voice.

VOR's mission is to advocate with Members of Congress, who make the laws that direct the care for our family members with I/DD and autism. We advocate with State and federal agencies that allocate funds for DD services and with state officials oversee those services and the use of those funds.

VOR's mission is to keep you informed, so that you may better advocate for your loved ones with I/DD.

VOR's mission is to advocate for high-quality care and human rights for all individuals with intellectual and developmental disabilities.



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Micki addressed VOR members at our 2022 Annual Meeting, telling the story of her 50 years of advocacy and philanthropy, starting with the birth of her son Robert, through her building of 25 homes for people with intellectual disabilities, and sharing her experiences, hopes, and fears as she navigated the political and financial landscape that defines the I/DD system today.

Special Offer Extended!

Give Two VOR Gift Memberships for the Price of One!

From now until December 31st, when you give a friend or family member the gift of a one-year membership in VOR,

you may give another gift membership for free!

This offer applies only to individual gift memberships. You must be a current member to take advantage of this offer, and your gift recipients must either be new members or people whose membership have lapsed for more than one year.

Iowa agrees to Federal Restrictions, Monitoring As it Moves Residents from Glenwood

By Michaela Ramm, Des Moines Register, December 1, 2022

Federal officials will monitor Iowa's controversial Glenwood Resource Center over the next three years as the state works to move residents to new homes with adequate support and supervision.

Iowa officials have reached a settlement with the U.S. Department of Justice as part of a federal investigation into Glenwood Resource Center, a troubled institution for people with severe disabilities that is set to close in the next two years.

The consent decree hasn't been approved by a court. Once in effect, it mandates the state must address findings from the 2019 investigation, such as ensuring adequate oversight and accountability as well as addressing deficiencies that led to the alleged constitutional violations.

The consent decree will ensure the state is committed to remedying conditions at Glenwood while it remains open, federal officials say. An independent monitor will be appointed to assess Iowa's compliance with federal officials' requirements.

However, with the southwest Iowa facility set to close by 2024, a key provision from the settlement is that the state is required to ensure these residents are moved "to the most integrated setting consistent with their informed choice, needs and preferences, with the appropriate services and supports in place," federal officials say.

That provision will apply to Woodward Resource Center, a second state-run institute that will remain open, if more than one-third of current Glenwood residents — or more than 50 individuals — move into the facility, federal officials say.

The remaining residents at Glenwood must leave for new homes by June 30, 2024, according to a plan laid out by the state. Some may be transferred to Woodward or secure a community placement elsewhere.

Under the agreement, federal officials require the state to implement transition plans for Glenwood residents that prioritize community-based facilities and that operate under the presumption that "with sufficient supports and services, all residents (including residents with complex behavioral and/or medical needs) can live in an integrated setting."

The consent decree states residents should not be transferred to Woodward unless they have been provided "a meaningful choice of community providers consistent with their identified needs and preferences, and have made an informed choice to continue receiving services" at a state-run institution.

To be offered a meaningful choice of providers, the state must evaluate the settings a resident is most likely to have a successful transition to. That includes aspects like preferred geographical location and proximity to family.

Glenwood staff are already in the process of identifying appropriate placements for each resident, state officials say. To date, 32 residents have transitioned to other settings.

Read the full article here

Read the DOJ press release here

Download a copy of the proposed settlement agreement here

The new coalition will work together across various sectors to develop policies to promote industries and workforce opportunities within them, according to a news release. The collective will support a network that already employs around 5,000 Missourians with disabilities and around 900 staff at 89 sheltered workshops throughout the state. These environments provide those with disabilities a safe and supervised workplace, as well as community programs, according to the release.

"The Missouri Association of Sheltered Workshop Managers is proud to be part of this unique and unprecedented collaboration," MASWM President Rob Libera said. "Missouri is a leader in providing opportunity and employment choice for people with disabilities. These jobs provide stability, self-worth and dignity to thousands of Missourians. We applaud Lt. Gov. Kehoe for this initiative, and look forward to working alongside the Buy Missouri program, the Missouri Association of Manufacturers, and the Missouri Department of Education in continuing to promote the quality and reliability of Missouri products and services."

Continued

“We cannot have a ruling go into place that’s going to bind our hands, that’s going to push people into homelessness, essentially,” Kinsley told reporters. “We’ve got to find a different path.” 

Kinsley mentioned Keith McDonald, whose 18-year-old daughter lives at TLC, an intermediate care facility in Raleigh for young people with disabilities. McDonald said later Wednesday that he’s worried that denying new admissions even years from now will discourage investments at private facilities and harm their current clients.

“It’ll have a disastrous impact,” McDonald said.

The lawsuit’s lead plaintiff is a western North Carolina woman who had been forced to move into a state-run development center in Morganton when community-based services dried up. She is no longer living at the center.

Read the full article here

New York - Lawmakers Prepare to Fight for Vetoed Group Home Bill

By Kate Lisa, Spectrum News, November 30, 2022

Unhappy lawmakers say they'll push back against Gov. Kathy Hochul's decision to veto legislation to create a team of 20 people to give state agencies feedback about the operations of group homes in New York.

It was one of dozens of measures the governor vetoed last week for various studies, task forces or commissions. They should be part of the next state budget negotiations, Hochul said in her veto message.

Sponsor Sen. Shelley Mayer says the governor shouldn't have grouped her legislation in with the others.

The bill, which passed the Legislature this year with strong bipartisan support, would have created a group home working group comprised of facility residents and their caregivers to give input to the state Office for People With Developmental Disabilities and the state Office for Addiction Services and Supports.

"This is not a study," said Mayer, a Yonkers Democrat. "This is not a task force that is to look at a problem — this is a bill to actually require the agency to deal more directly with the families."

Legislative leaders would appoint the working group's members to hold annual meetings in different regions and issue a report to both state agencies.

"It should be something that the agency does without legislative requirement," Mayer said.

People with developmental disabilities or those affected by substance abuse have struggled to have contact with the state about issues in group homes or how they operate, lawmakers and advocates said.

It's a personal fight for Assembly sponsor Angelo Santabarbara, whose 21-year-old son, Michael, lives in a group home for people with developmental disabilities.

"Quite frankly, there's no good reason to veto this bill," said Santabarbara, a Democrat from Rotterdam.

The appointed group members are not paid, so Santabarbara says the governor's cost concerns don't add up.

"The cost, if any, will be very minimal, and it will more likely be a reallocation of resources and not an increase in costs," he said.

The working group would meet and give recommendations to OPWDD and OASAS for three years and help departments with their five-year comprehensive plans.

The COVID-19 pandemic has highlighted conditions of neglect, abuse and other issues in adult-care facilities around the state, and continues to be a top priority for lawmakers.

Read the full article here

Michigan - Staffing Woes Foil MI Efforts to Keep Residents out of Nursing Homes

By Robin Erb, Bridbe Michigan, November 18, 2022

• MI Choice, which helps keep Medicaid seniors and disabled residents out of nursing homes, increased funding last year
• But its expansion has been stymied because of huge staffing shortages 
• The problem is likely to get worse in the next decade, as more Michigan residents approach retirement 

Efforts to help older Michiganders and those with disabilities stay in their homes and avoid nursing care have sputtered, as workers who would assist in homes turn to other jobs.

The state’s popular MI Choice program, which assigns workers to help residents who qualify for Medicaid stay in their homes, now has 4,000 job openings out of more than 20,000 slots budgeted by the state.

Those empty positions are overwhelmingly the result of a severe worker shortage — in direct care staff, social workers, nurses and others, according to Scott Wamsley, director of the state’s Bureau of Aging Community Living and Supports. The main reason, people involved in senior care say, is that potential workers can earn more in other fields, even as pay for these home assistance jobs has risen in recent years. 

The worker squeeze is felt up and down the supply chain that helps residents remain in their homes and avoid, or at least delay, nursing home care. It adds pressure on service agencies scrambling to hire direct-care workers, and on seniors and others who rely on aides to help with tasks such as errands, light housework, changing bandages or organizing medications. 

Wamsley said the problem used to be not having funding for direct-care workers. Now there is more funding, he said, but the program isn’t attracting “workers to be able to serve those people.” 

It’s not the first time state health officials have been frustrated by worker shortages. In September, an official with the Michigan Department of Health and Human Services told Bridge the state had to close more than 70 psychiatric beds over the summer largely because of a lack of staff.

Continued

Kaiser Family Foundation released several reports this week documenting findings from a 50 State Study showing the impact of the Covid Pandemic on HCBS services, the shortage of workers, and inaccuracies in states' reporting of waitlists.

The article below provides a good, short overview of the Kaiser articles, and is followed by direct links to the Kaiser studies.

Worker Shortages, Waiting List Inaccuracies Complicate HCBS Programs 

By Kimberly Bonvisutto, McKnights Senior Living, November 30, 2022

The COVID-19 pandemic put a spotlight on fundamental, long-term challenges for state Medicaid home- and community-based services programs, but it also provided opportunities for change, according to a new Kaiser Family Foundation issue brief.

In 2021, states reported offering 255 waivers under Section 1915(c), the largest source of HCBS spending and the type through which assisted living operators often provide services, with an average of five waivers per state. The data are based on the 20th KFF survey of state Medicaid HCBS officials in all 50 states and Washington, DC, between April and September. 

All responding states indicated they were experiencing direct care worker shortages, which were cited as a contributing factor to provider closures during the pandemic. Most states (44) reported a permanent closure of at least one Medicaid HCBS provider this year, up from 30 states in 2021.

The Peterson-KFF Health System Tracker showed that the number of workers dropped by 9% in community elder care facilities and 14% in nursing care facilities between February 2020 and June 2022. 

Most states (48) responded to the workforce crisis by increasing HCBS provider payment rates. Half of the states that increased provider payment rates required the rate increases to be passed through to worker wages. More than half of states (28) indicated that they plan to continue those rate increases after the temporary funding expires. 

ARPA dollars target HCBS enhancement or expansion

The American Rescue Plan Act and the COVID-19 public health emergency gave states new, but temporary, flexibility and funding to address pandemic-related challenges. Those initiatives, according to the KFF survey, allowed states to respond to the pandemic and invest in HCBS programs.

More than two-thirds of states (35) reported using ARPA funding for initiatives with high start-up costs that were time-limited to avoid higher ongoing costs after enhanced federal funding ended. Some of those initiatives included provider bonuses or incentive payments, worker training or certification programs, studies to assess provider rates or workforce development, workforce registry expanding and IT system upgrades.

All reporting states indicated that they adopted policies to streamline enrollment processes and expand access to Medicaid HCBS during the public health emergency. Although telehealth service delivery will continue in most states, increased HCBS use limits are more likely to end with the public health emergency. 

Waiting lists inaccurate measurement of need

Meanwhile, more than 650,000 people spent an average of 45 months on Medicaid HCBS waiting lists in 2021, but those lists can both overstate and understate unmet need, according to a separate KFF analysis of data from state and Washington, DC, on the ongoing effects of the pandemic on HCBS.

According to the report, waiting lists sometimes can overstate the need for services because not all states screen for Medicaid eligibility before adding people to their lists. That approach can inflate numbers by including people who never may be eligible for services. In fact, KFF found that more than half of those on HCBS waiting lists lived in states that did not screen for eligibility, making comparisons among states difficult.

On the flip side, waiting lists also can understate need, reflecting populations a state chooses to serve, as well as the resources it commits. In many instances, people may need additional services, but because a state doesn’t offer those services, or limits their availability to specific populations, those individuals would not appear on waiting lists.

Although most people on waiting lists have intellectual or developmental disabilities (84%), they comprise less than half of those served through 1915(c) waivers. Older adults and adults with physical disabilities account for 24% of those on waiting lists. 

In 2021, individuals on waiting lists waited an average of 45 months to receive HCBS waiver services, up from 44 months in 2020. People with intellectual or developmental disabilities waited the longest, at 67 months, on average, whereas older adults waited an average of two months. 

The future of HCBS

Looking ahead, the KFF analysis stated that shortages of direct care workers may continue to create problems for states seeking to reduce their waiting lists. States reported workforce shortages as the primary effect of the COVID-19 pandemic across all HCBS settings. 

“It remains to be seen how policy changes enacted during the pandemic will affect the provision of HCBS in future years, and whether the investments in HCBS through the American Rescue Plan Act will result in capacity increases even after the federal funding ends,” the report concludes.

Read the full article here

Read the KFF Report on the 50 State Survey here

Read the KFF Report on Wait Lists here

Read the KFF Wait List Data Here

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

VOR SUPPORTS:

Modifying the Build Back Better Act to include language to provide funding for Intermediate Care Facilities in parity with increased funding for HCBS services, and to remove any provisions that would phase out or eliminate 14(c) wage certificate programs.

H.R. 4779 & S. 1437 - Recognizing the Role of Direct Support Professionals Act - To require the Office of Management and Budget to revise the Standard Occupational Classification system to establish a separate code for direct support professionals, and for other purposes.

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

S. 4102 - SSI Savings Penalty Elimination Act - To amend title XVI of the Social Security Act to update the resource limit for supplemental security income eligibility.

H.R. 3733 - Essential Caregivers Act of 2021 - To amend titles XVIII and XIX of the Social Security Act to require skilled nursing facilities, nursing facilities, intermediate care facilities for the intellectually disabled, and inpatient rehabilitation facilities to permit essential caregivers access during any public health emergency under the Medicare and Medicaid programs.

H.R.6075 - The HEADs UP Act - To amend the Public Health Service Act to expand and improve health care services by health centers and the National Health Service Corps for individuals with a developmental disability as a Medically Underserved Population (MUP).

H.R.4761 - A bill to amend the Rehabilitation Act of 1973 to ensure workplace choice and opportunity for young adults with disabilities.

H.R.4762 - A Bill to amend the Rehabilitation Act of 1973 to clarify the definition of competitive integrated employment.



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 & S. 3238 - The Transformation to Competitive Integrated Employment Act - this bill purports to assist employers providing employment under special certificates issued under section 14(c) of the Fair Labor Standards Act of 1938 in transforming their business and program models to models that support individuals with disabilities through competitive integrated employment, to phase out the use of these special certificates. We feel that, if enacted, tens of thousands of people with I/DD and autism will still be forced out of opportunities they currently, needlessly, and left without viable alternatives to occupy their time or address their needs and their abilities.

H.R.4131 & S.2210 - The Better Care Better Jobs Act - To be clear, we don't oppose this bill. We object to the fact that it excludes the most vulnerable members of the I/DD population.

While the Better Care Better Jobs Act would greatly increase the amount of federal funding for people with I/DD, it only supports those in waiver programs receiving Home and Community Based Services. It unjustly discriminates against those who have chosen Intermediate Care Facilities as the necessary and proper form of residential treatment. By giving a 10% increase n federal matching funds only to HCBS clients, and providing training and increased pay only to direct support professionals working in HCBS facilities, the act deliberately favors one form of treatment over another, one ideology over another, and one set of people with I/DD over another.

H.R.6860 & S.3417 - The Latonya Reeves Freedom Act - Supporters of this bill consider it to be the Disability Integration Act of the 117th Congress. The bill calls for the phasing out of intermediate care facilities for individuals with Intellectual Disabilities.

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