News

 the Centers for Medicare & Medicaid Services (CMS) published a proposed rule, Ensuring Access to Medicaid Services (Access Rule) to improve access to — and quality of — Medicaid services and promote health equity across the Medicaid program.
The proposed rule applies to all Medicaid services, including the home and community-based services (HCBS) that are vital to people with disabilities and older adults. This means that input from ACL’s network is critical. Comments must be received by July 3, 2023.
The proposed Access Rule is groundbreaking. It is both broad in scope and responsive to issues that are important to the aging and disability communities. The proposed rule strengthens many aspects of Medicaid HCBS, including the direct care workforce, health and safety protections, quality of services, and state accountability and transparency, by introducing new requirements in each of these areas. ACL worked closely with our CMS colleagues in developing this rule to ensure that the experiences and priorities of people receiving Medicaid HCBS and their families, along with ACL’s disability and aging networks, were considered. In 1993, Congress added section 1915(c) to the Social Security Act, authorizing the creation of the Medicaid HCBS waiver program. Forty years later, nearly two million people are supported to live in the community by the program. The proposed Access Rule recognizes the important role Medicaid HCBS is now playing and the need to ensure that people can access these critical services.

TLDR: What’s most important for people with disabilities and older adults to know?

The proposed rule is complex, and despite our best efforts to be succinct, this blog post is very long! If you don’t have time to dig in, here’s what’s most important to know right now. Under the proposed Access Rule:
  • At least 80% of all Medicaid payments for specific HCBS — homemaker services, home health aide services, and personal care services — must be spent on compensation for direct care workers to help address the direct care workforce crisis.
  • States must report information on their section 1915(c) HCBS waiver waitlists, including the length of the waitlists. They also must report whether people can access services across section HCBS authorities once the services are approved. This data allows a comparison of HCBS accessibility in different states.
  • States must demonstrate that as part of person-centered planning, a reassessment of need is completed at least once a year for people continuously enrolled in HCBS programs. They also must demonstrate that service plans are reviewed and revised annually based on that reassessment. 
  • States must operate and maintain an electronic incident management system (using a common minimum definition for what is considered a “critical incident”) and investigate, address, and report on the outcomes of the incidents within specified timeframes.
  • States must establish and manage a grievance process for people receiving HCBS in fee-for-service plans. (This already exists in Medicaid managed care.) This system will give people a way to notify their state Medicaid agency if they have a complaint about how a provider or state is complying with Medicaid requirements. 
  • States must report on a set of nationally standardized quality measures specifically for HCBS established by CMS.
Community living is a civil right, but many people with disabilities and older adults need HCBS to exercise it. HCBS can make it possible for people to live where they want to live, to work in careers they choose, to stay connected to friends and family, and to participate in the community in ways that are meaningful to them.
But people must be able to access HCBS, and the services must be high quality. This proposed rule takes significant steps toward ensuring both.

Background

People with disabilities and older adults rely on the Medicaid program to meet a wide range of needs, including health care, mental health services, and supports to live in the community (known as HCBS). Each state designs its own Medicaid program, but the federal government sets standards and requirements, reviews and approves each state’s design of the program, and makes sure that federal requirements are followed. The proposed Access Rule establishes standards to ensure that services provided through the Medicaid program are available and meet the needs of people who rely on them.
This blog is focused on the parts of the proposed Access Rule that would have the most significant impact on older adults and people with disabilities who use HCBS. However, individuals, their families, and advocates should consider providing comment on all parts of the proposed rule that affect their experiences with Medicaid services. (CMS has released a series of fact sheets highlighting all of major parts of the proposed rule.)

How is the proposed Access Rule different from the HCBS Settings Rule?

The HCBS Settings Rule established important standards for HCBS. Published in 2014, it is a landmark achievement in our country’s pursuit of full community inclusion for people with disabilities and older adults. It was built on decades of work by the disability rights movement, and it furthers the goals of the Americans with Disabilities Act (ADA) and the Supreme Court’s Olmstead decision, which affirms that community living is a civil right.
The Settings Rule is, at its core, about basic human rights that most people take for granted. This includes things like the ability to choose when you go to sleep, what you eat, who you live with, the right to have visitors of your choice, the ability to lock your door, and to choose which activities you want to do. It’s about making sure that everyone can fully participate in their community with the rights, dignity, respect, and freedoms from coercion and restraint that every community member deserves. In short, the Settings Rule establishes what it means for services to be “community-based.”
But the HCBS Settings Rule does not address all issues related to HCBS, including access to services, requirements for systems related to health and safety, or oversight and reporting requirements broadly related to quality, access, or health and safety. The proposed Access Rule would significantly strengthen Medicaid HCBS by addressing the direct care workforce crisis, person-centered planning, health and safety, access to services, and state transparency through public reporting.

Key provisions related to HCBS  

HCBS can be provided through a number of Medicaid authorities. That includes 1915(c) waivers, but services also can be provided through 1915(i) State Plan HCBS, 1915(k) Community First Choice, 1915(j) Self Directed Personal Assistance Services, and 1115 demonstration waivers. Except where otherwise noted in the proposed rule, the Access Rule’s requirements apply to all HCBS authorities and to both fee-for-service and managed care delivery systems. Below are the key provisions related to HCBS:

I. Workforce compensation

One of the biggest challenges people face when trying to get HCBS is the shortage of direct care workers. All states are facing a direct care workforce crisis: a long-standing problem made worse by the COVID pandemic, due to an increase in demand for services, and low wages and poor benefits for these jobs. A stable and reliable workforce is necessary to support people to live and fully participate in their communities. Without a strong direct care workforce, many people will be unable to access the services they need. The Access Rule would help strengthen the direct care work force by establishing:
  • A minimum percentage requirement: To address the wage and benefit issue, the proposed rule would require that at least 80% of all Medicaid payments for specific HCBS — homemaker services, home health aide services, and personal care services — be spent on compensation for direct care workers. This significant step would ensure that Medicaid funds are being used to better compensate the workers providing services. This provision seeks to address one of the most critical challenges to hiring and retaining direct care workers. CMS seeks comment on whether 80% is the right minimum percentage. CMS is also requesting comment on whether this requirement should apply to services other than these three specific ones.
  • Transparency on payment rates: There are several provisions in the proposed rule intended to promote transparency and accountability regarding payments to direct care workers. The proposed rule would require states to make all Medicaid fee-for-service (FFS) payment rates publicly available through a published rate schedule. States also would be required to report annually on the percentage of payments spent on the compensation of direct care workers.
  • Regular review of payment rates: The proposed rule would require states to conduct a payment rate analysis every two years and would require a stakeholder advisory committee to make recommendations regarding rates paid for homemaker, home health, and personal care services. CMS seeks comment on whether these requirements also should apply to other HCBS too.

II. Access to HCBS

HCBS are optional services, which means that states can determine whether they will provide services, which populations they will serve, how many people they will serve, and what services they will provide. The result is that in many states, there are waiting lists for one or more HCBS waiver programs. The federal government does not currently collect information about states’ waitlists, making it difficult to determine how accessible HCBS is in different states. The proposed rule aims to change that by requiring states to report on:
  • HCBS waiting lists: For states that have waitlists for their waiver programs, the proposed rule would require each state to describe, every year, how they maintain the waitlist, including whether people on the waitlist are screened for eligibility and whether (and how often) they are periodically rescreened for eligibility. States would also be required to report how many people are on the waitlist and how long people stay on the waitlist, on average. 
  • Waiting time for approved services: The rule proposes to require states to report every year on the average length of time people have to wait for services to start after they are initially approved to receive homemaker services, home health aide services, or personal care services. States would also report every year on the percentage of authorized hours that are provided to individuals for those same services. These requirements will help CMS identify — and address — gaps between the services for which people are approved and what they receive. CMS seeks comment on whether this requirement should be extended to other HCBS as well.

III. Person-centered planning

The services people received through Medicaid HCBS programs must be planned using a person-centered process. That means that the plan reflects the preferences of the person receiving services, and it must be focused on helping the person achieve their individual goals — as set by them. The person-centered plan is the foundation for meeting each person’s needs and supporting them so they can live the life they want to live. It is through the person-centered planning process that people make choices about their lives and the services they receive. 
It’s important that these plans are reviewed — and updated — regularly to ensure they continue to meet changing needs. The proposed rule would strengthen accountability for person-centered planning by requiring states to demonstrate that a reassessment of need is completed at least once a year for people continuously enrolled in HCBS programs and that the service plan is reviewed annually (and revised if needed), based on that reassessment.

IV. Reporting and addressing critical incidents to improve health, safety, and service quality

HCBS are essential to ensuring the health, safety, and welfare of people with disabilities and older adults. A good incident management system should not only respond when an individual is harmed or at risk of harm but should also give states real-time data to prevent incidents. This requires identifying trends and patterns — and putting policies in place to prevent incidents and harm.
For the first time, this proposed rule would require states to operate and maintain an electronic incident management system that identifies, reports, triages, investigates, resolves, tracks, and trends critical incidents.
Also for the first time, CMS is proposing a minimum definition of critical incidents, which will increase consistency across states. The definition of a critical incident proposed by the rule is comprehensive. It includes verbal, physical, sexual, psychological, or emotional abuse; neglect; exploitation including financial exploitation; misuse or unauthorized use of restrictive interventions or seclusion; a medication error resulting a consultation with a poison control center (including telephone calls), an emergency department or urgent care visit, hospitalization, or death; or an unexplained or unanticipated death, including but not limited to a death caused by abuse or neglect.
The rule would also require states to use information from sources other than provider reports to identify critical incidents. These sources include claims, Medicaid Fraud Control Units, adult and child protective services systems, and law enforcement, to the extent allowed under state law. States also are required to share information about the status and resolution of investigations with other agencies, to the extent allowed under state law.
Finally, the rule sets timeframes for investigation, resolution, and corrective actions related to critical incidents. It would also require states to report the results of an incident management system assessment every two years to show that they meet the new requirements. CMS is seeking comments on whether two years is the right timeframe for reporting.

V. Grievance procedures

The proposed rule would require states to institute and manage a grievance process for people who receive services through Medicaid fee-for-service plans. This will provide people receiving services the ability to notify their state Medicaid agency if they are unhappy with a provider or have a complaint about how a provider or the state is complying with Medicaid requirements — such as the person-centered planning requirements or the HCBS Settings Rule — and establish a process for the state to both investigate and respond to the complaint. (People who receive HCBS through managed care systems already have access to a grievance process.)
This proposed rule includes record-keeping requirements and would require states to review grievance data as part of their ongoing monitoring procedures. Grievances would also need to be available upon CMS request.

VI. Quality measures

For the first time, CMS is proposing to require states to report on a set of nationally standardized quality measures specifically for HCBS, as is required for other Medicaid services. Reports would be required every two years.
The quality measures required by the rule are designed to assess the things that are most important to people, including quality of the services delivered and how those services impact the quality of their life. These include things like choice, opportunities to work, and opportunities to see friends and family. States would be required to establish performance targets for each of the mandatory measures and report on the strategies they are using to reach those goals.
With a focus on reducing health disparities and advancing health equity, the rule also requires states to report data stratified by race, ethnicity, tribal status, sex, age, rural/urban status, disability, language, and other factors to provide insights and information to improve service access and quality.
Under the proposed, states would be required to report every other year on quality measures for their state HCBS program. The requirements to report stratified their data would be phased in over seven years, and CMS is seeking comment on the timeline for that phasing. 

Closing

Commenting on proposed rules is one of the primary ways you can have an impact on federal policy. It is important for the people who rely on HCBS and their families and advocates, including the disability and aging networks, to make their voices heard in this rule-making process.
Comments from people who directly experience obstacles to accessing services and who struggle to get their needs met can improve the HCBS program for everyone. You can make a difference by commenting on how the rule will benefit people receiving services and how it might be strengthened.
Comments can be submitted online or by mail. They must be received by July 3, 2023.
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The U.S. Department of Housing and Urban Development (HUD) seeks public comment on potential changes to its regulation implementing Section 504 of the Rehabilitation Act for recipients of HUD federal financial assistance. Section 504 prohibits discrimination on the basis of disability in programs and activities receiving federal financial assistance from HUD. HUD’s Section 504 Advance Notice of Proposed Rulemaking (ANPRM) acknowledges the need to align HUD’s Section 504 regulation with environmental, societal, and technological advances and emerging issues.   

As indicated in the ANPRM, HUD requests general information and comments on its Section 504 regulation relating to recipients’ obligations, including advances in accessible design, the use of websites and other technology, and auxiliary aids and services, such as assistive technologies, that have become available since HUD’s Section 504 regulation was originally published in 1988. Additionally, HUD’s Section 504 ANPRM includes several questions on HUD’s existing Section 504 regulation in relation to effective communication, program accessibility, updating federal accessibility standards, and enforcement.  

All members of the public, including individuals with disabilities, HUD recipients, States, and local governments, Tribes, housing providers, and social service providers, are invited to provide input by July 24, 2023 via any of the following methods:  

Regulations Division 
Office of General Counsel 
Department of Housing and Urban Development 
451 7th Street SW 
Room 10276 
Washington, DC 20410–0500  

For background and more information, visit www.hud.gov/504 or access the docket via https://www.regulations.gov/document/HUD-2023-0029-0001. For further information, contact Amy Gioletti at the toll-free number 1-405–609–8561
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People with disabilities in Wisconsin could help solve the labor shortage, but recruitment efforts often disregard the population. A study shows mismatch between what employers say they value and what they practice when it comes to hiring individuals with disabilities..

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This policy watch explores the potential implications of ending the public health emergency (PHE) for Medicaid HCBS programs, including new or continued workforce challenges and potential reductions in patients’ access to care.

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Invisible disabilities, as the name suggests, are disabilities that are not immediately apparent to others. Out of the 61 million adults in the United States who identify as having a disability of some kind, roughly 10% of those are invisible disabilities, which may include cognitive, neurological, or mental health challenges. The article suggests three ways leaders can support people with invisible disabilities.

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This research compares trends in the size of the home care workforce with data on Medicaid home and community-based services (HCBS) participation between 2008 and 2020. The number of home care workers per 100 HCBS participants declined by 11.6 percent between 2013 and 2019, with preliminary estimates suggesting that further declines occurred in 2020. Improving access to HCBS will require not just expanded insurance coverage but also new workforce investments.

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Recently, the Biden administration announced the most comprehensive set of actions an administration has taken to improve care and support caregivers ( including family caregivers). The order includes over 50 directives from almost every cabinet-level agency to expand access to affordable, high-quality care and provide support for caregivers.

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Momentum for policy change at the state level continues to grow dramatically for the direct care workforce. In recent years, PHI has produced a range of resources to equip state advocates with information and guidance to advance policies on this workforce. Review five noteworthy resources that can bolster advocacy and help generate wins for workers nationwide.

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Self-Determination Network News:

April 2023

Connect | Share |Learn | http://sdnetworkwi.org

Survival Coalition Survey: The Face of Caregiving


The Survival Coalition (which InControl Wisconsin is a member of) needs your help to put a real face on the dire impacts the caregiver crisis is having! It is critical that policymakers hear personal stories from across the state on the impacts the caregiver crisis is having on people with disabilities, older adults, and family caregivers, filling in gaps. We also need to hear from care workers who are being driven from the profession by low pay and no benefits. The goal of the survey is to share your stories directly with policymakers as they craft the state budget and with the media to draw attention to the crisis. Take the survey by April 26th! 


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2023 Disability Advocacy Day

It was great seeing so many of you at Disability Advocacy Day a few weeks ago. If you weren’t able to attend in-person, we hope you were able to call your legislators.  We want to keep the conversation going. By sharing our tips about tricks, we can help one another be stronger advocates!   Join the Conversation



State Budget Advocacy

Late in February, Governor Evers released his 2023-2025 budget proposal.  There is one more Joint Finance Committee listening session in Minocqua on April 26th. We strongly encourage people to attend if you're able. If you were unable to attend any of the sessions in-person, you can submit comments here. The Survival Coalition put together an analysis of the proposal from a disability perspective.  The Caregiver Crisis Coalition also has created a proposal that addresses many aspects of the caregiver crisis. We encourage you to use these documents while submitting your comments and talking to your legislators about what you'd like to see in the budget.  

 2023 Self-Determination Conference Call for Presenters

Are you interested in presenting at the 2023 Self-Determination Conference?  The Wisconsin Board for People with Developmental Disabilities is seeking session proposals for Tuesday, October 17 & Wednesday, October 18, 2023.  Proposals are due by noon on May 12th. Submit a proposal today!

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The Self-Determination Network includes some very talented members and we want to help you to get to know each other a little better. Member Spotlight is a great way for us to get to know each other better.

This month, we shined the spotlight on Emily. This karaoke singing young lady keeps busy by doing all sorts of fun activities. She loves to travel and play sports. She loves participating in activities with different groups and encourages people to join. Check out this month's Member Spotlight to get to know Emily.   

Who should we shine the spotlight on next?

128 Stacy’s Journal



"Having connections helps everyone find their way through life. People with disabilities are no different. In fact, for many different reasons such as preconceptions, isolation, and the lack of resources, we likely rely on connections more than most people. For people with disabilities, the power of networking and finding connections is crucial in our lives."

In this month's entry, Stacy talks about how the connections she has made have shaped her entire life. Do you have connections that have benefited you?



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Check out the Latest Videos!

The Self-Determination Channel is a YouTube channel by and for people with developmental or intellectual disabilities. Unlike other channels, the Self-Determination Channel stands stand out from other channels on YouTube because self-advocates host the videos, and decide and create the content. Videos are posted a couple times a month on a variety of topics self-advocates care about such as technology, employment, caregivers, independent living, and advocacy.

Check out the newest videos on the channel:

We encourage you to subscribe to the Channel (you can do so by clicking the red Subscribe button on any of the video pages).

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Take five minutes to check out what's happening on the Self-Determination Network:

  • Seniors Taking Care of Seniors: Older workers are helping fill a labor shortage in the home-care industry that worsened during the pandemic. Read about how more retirees are taking care of their elders.
  • Home Care a Sticking Point for Medicaid Spending: President Joe Biden and his administration are using the importance of personal home care as a way to fight back against some Congress members’ desire to cut Medicaid funding. Learn how the White House is trying to keep health care off the chopping block for budget cuts.
  •  New Fact Sheet: The Centers for Medicare & Medicaid Services (CMS) has issued a fact sheet that addresses the following areas: COVID-19 vaccines, testing, and treatments, telehealth services, waiver flexibility, hospital-at-home care, provider scope and oversight flexibility, and Medicaid continuous enrollment. Check it out!
  • Valuing Family Caregivers: Care provided by millions of unpaid family caregivers across the U.S. is valued at a staggering, estimated $600 billion annually. Learn about some of the efforts underway to strengthen support for family caregivers.
  • Hiring People with Disabilities:  With labor shortages across the country, overlooking those who can work but need some accommodations comes at a high cost. Find out why now more than ever it's critical to hire and retain people with disabilities.
  • Accessibility Professional: The Accessibility professional is not just a change agent but in fact, part of a larger tribe that sees the world through a lens of inclusivity and espouses a new cultural norm that is essential in defining the mindset of the digital economy of the here-and-now and the future of the industry. Learn about how this profession has the responsibility of driving change in the disability economy.
  • Waiting Lists a Thing of the Past: A proposal in Congress would do away with Medicaid's institutional bias and guarantee people with developmental disabilities access to services in the community. Read about how a new law would eliminate waiting lists for community-based services over time.
  • Massive Confusion over Ballot Assistance: Going into the April 4th supreme court election, Wisconsin voters were still confused about ballot assistance and ballot return assistance. Find out what caused the confusion.
  • The Fight Against Subminimum Wages: Advocates are highlighting a system of state tax credits across the US that allow employers to pay employees as low as $3 an hour.  Read about how some states have passed laws to ban subminimum wages.
  • Professionalizing Caregiving: Could professionalizing caregiving be the answer to the shortage? Learn what advocates say is needed to solve the crisis.
  • Lacking Data: Thousands of people in Wisconsin lose the right to vote due to being labeled "adjudicated incompetent." Learn about the state lacks a defined system to track people who receive this label.
  • Municipal Clerks Week: Municipal Clerks Week is coming up the first week of May. Do you have a great municipal clerk? Nominate them today!
  • Take Survey: The League of Women Voters of Wisconsin and partners are conducting a survey to learn about voters' experience during the April 4th election. Please take the survey!
  • Guardianship and Voting Rights: In Wisconsin, people under guardianship retain the right to vote unless a court specifically removes the right. Check out these resources Disability Rights developed  that explains how to determine if you retain  or lost the  right  to vote, and, if you have lost the right to vote, how to petition the court to restore it.

128 Upcoming Events 

Here's a sample of upcoming events listed on the Self-Determination Network:

Post your event on the Self-Determination Network and it can be included in future Network News emails to members! Questions? Suggestions?  Contact Stacy Ellingen. 

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The Self-Determination Network is powered by InControl Wisconsin and supported financially by our members and Sponsors. We couldn't keep this Network going with you!  Find out how you can help support the Network.

 

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In Wisconsin, people under guardianship retain the right to vote unless the court expressly removes that right.
Disability Rights Wisconsin has developed resources that explain how to determine if you have retained or lost the right to vote, and, if you have lost the right to vote, how to petition the court to restore your right to vote.
Help us get the word out! We would love to share these resources with you. If you have a guardian, if you are a guardian, or if your organization supports people who have a guardian, here’s a great chance to learn more about voting rights.
To order copies of our resources, please email your request to info@disabilityvote.org See below for links to our website pages on Guardianship and Voting.
Link to resources:
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