News


ACL is excited to announce $20 million in new funding for our first major initiative in support of the 2022 National Strategy to Support Family Caregivers. ACL will award five cooperative agreements for projects to foster advancements in two programs authorized by the Older Americans Act — the National Family Caregiver Support Program and the Native American Caregiver Support program.

Each project will receive up to $1.1 million annually for four years to develop, test, and disseminate new approaches to supporting family caregivers. Using the caregiver strategy as a roadmap, and with technical assistance from ACL, each project will focus on one of the five priority areas of the strategy:
  1. Improved awareness of and outreach to family caregivers.
  2. Inclusion of family caregivers in the care team.
  3. Services and supports for family caregivers.
  4. Financial and employment protections.
  5. Data, research, and best practices.

This initiative creates an unprecedented opportunity for the aging and disability networks to build new partnerships with organizations in other fields that can help drive innovation in these areas. A wide range of public and private organizations are eligible and encouraged to apply, so please share this announcement broadly.

Awardees will be expected to collaborate with ACL on all activities and to align their work with the strategy and its companion document, First Principles: Cross-Cutting Considerations for Family Caregiver Support. 

The initiative is in keeping with President Biden’s Executive Order on Increasing Access to High-Quality Care and Supporting Caregivers,  signed April 18. This executive order directs federal agencies to take more than 50 actions making affordable, quality childcare more available to working families; expanding access to home and community-based services; growing and strengthening the direct care workforce; supporting family caregivers; and more — giving us a unique opportunity to transform our long-term care systems and mitigate the challenges that family caregivers face.

Complete details and application instructions are posted on Grants.gov. Applications are due Monday, June 26, 2023.
 

ACL will host an informational conference call this Thursday, May 4, 2023, at 2:00 PM ET.

  • Call-in number: 800-779-3216
  • Passcode: 3818865#
A downloadable recording and transcript will be posted on Grants.gov soon after the call concludes. If you need accommodations to participate in the call, please contact Greg Link.s
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Stacy's Journal: 20 Years Later


By Stacy Ellingen, 2023-05-01

“Remember when this happened?” “Remember when that happened?” Can you believe we did this?” ”Can you believe we did that?” Whether it’s a dinner party with friends, a random family gathering, a class reunion, or another social event, as adults we often find ourselves reflecting on the past. Reflecting is an almost unavoidable part of life. Depending on the circumstances, sometimes it can bring up unpleasant or hurtful memories, but oftentimes it brings back joyful or funny memories. Reflecting also makes us think about all that has happened and how far we’ve come. I can’t speak for others who have different abilities, but I love to reflect. Especially when things get hard and seem impossible, thinking and talking about my past helps me realize how far I’ve come and ignites my ambition to keep fighting.

“I, Stacy Ellingen, leave wondering what the actual speed limit is in the halls of Fondy High?” A class officer recently posted our Class Will in our class Facebook group as we get ready for our 20-year reunion at the end of this month. I have no recollection of putting that the will, but, when I read it, I thought it was hilarious! 20 years. I find myself wondering how that can even be possible. Sometimes, it feels like it was forever ago, but often, it seems like it yesterday. I can’t believe it’s been 20 years!

As the reunion approaches, I find myself reminiscing on my primary education. I was enrolled in the school district for 15 years. I started in Early Childhood programs when I was three-years-old (and I was in Early Intervention programs before that).  As I’ve explained in past entries, I was enrolled in regular kindergarten class when I five. From that point on, with the exception of a few modified gym classes sprinkled in throughout the years, I was in all regular education classes. I had a one-on-one assistant who helped me in the classroom. From second grade on, I was incredibly fortunate to have the same assistant with me until I graduated. Now that I’m working in the disability advocacy field, I realize just how rare that was. This special lady made my school years all they could be. We say it was meant to be because we were partners in crime! 😊 I contribute so much of my success to her—I’m confident that I wouldn’t be where I am today without her!

Since I was in all regular classes all the way through, my peers got to know me and understand that I was just like them except that my body didn’t work like theirs. Like every other kid, I made friends. Did it take some effort to be friends with me? Of course, it did, but know what? Kids did it on their own. I was never involved in any social skills group or anything—my classmates and I figured it out. Was everyone my friend? Heck no, but kids aren’t friends with every single classmate.  People in my classes learned how I did things and understood that my assistant was only there to help me physically. They saw me fail tests and occasionally get a bad grade on an assignment, but that proved to them that I was just like them.

As I’ve explained in previous entries, I contribute a huge part of my primary education to being involved in extra-curricular activities. This is largely thanks to my parents. For a few years in elementary school, my mom was a Brownie leader so that I could participate in that. In sixth grade, I was part of a chorus.   Saying that now, I realize it sounds kind of funny because I’m nonverbal and obviously can’t sing for the life of me, but, at the time, it didn’t even cross my mind; I was with my friends and that’s all that mattered! In junior high, I was part of the Junior Optimist Club for awhile (in fact, I was even a grade representative one year). In high school, I was involved in POPS (Power of Positive Students) for a year and then I got involved in Student Council my last two years. Again, physically, I wasn’t able to contribute very much, but I could participate in activities. Most importantly, I had social interaction with my peers. Another thing that really helped me fit in was that I attended all the school dances. I also attended almost all of the football and basketball (boys and girls) games in high school. It further showed my classmates that I wanted to fit in.

Did I receive some special recognition at the end of my senior year? Yes. I received a sportsmanship scholarship from a very special family. I was also invited to the senior sports banquet where I received a sportsmanship award. I think some of the coaches played a large role in it behind the scenes, but I was told it was voted on by the athletes. To date, that’s one of the most memorable moments of life. There was something really special about being the only non-athlete being invited to the sports banquet and then receiving a standing ovation from your peers who are amazing athletes. It’s something I’ll never forget.

Not to sound too nostalgic, but my graduation was unbelievably special. I had been in school for 15 years and people understood what an accomplishment it was. I had special connections with many people in the district. I knew it was an end of an era. It didn’t hit me until after the ceremony when my assistant and I were literally running through the halls of the high school and catching the elevator up to my homeroom where I received my actual diploma. At that point, I had no idea what my future held and I wasn’t worried about it. I was ready to take on the world!

20 years later and here I am. I don’t think I had any expectations back then. However, I would have never dreamed of where I am today. We had a 10-year reunion, and, at the time, I couldn’t believe everything that had happened in 10 years. However, I think more has happened in these 10 years than the first. At our last reunion, I had just graduated from college and moved into my apartment. I didn’t have a job and wasn’t involved in any sort of advocacy. I had an agency doing my cares. A lot has changed in 10 years! Will these things seem significant when I tell people at the reunion? Probably not, but that’s okay.  It’s important for me to remember how far I’ve come.

What will happen in the next 20 years? That’s a very scary thought. I won’t get into it in this entry, but the reality of the future has recently slapped me in the face. I’ll just say it’s too frightening to think about at the moment.  I’m beyond amazed and proud of what I’ve been able to accomplish in the last 20 years. I don’t know what I expected, but never in my wildest dreams did I think I’d end up where I am today. Do I wish that could accomplish other significant life milestones like many of my classmates have? Of course, I do, but desiring those things shows how “normal” I am. Will those special milestones ever happen for me? Maybe. Maybe not. For now, I’m trying to enjoy life to the fullest and not get too caught up in what’s next!

***The views expressed here are strictly those of the author and do not necessarily reflect those of InControl Wisconsin, the Network or any of our sponsors.

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A new report examines current research on equity, inclusion, and access for the 61+ million individuals in the United States with disabilities in key social determinants of health including employment, transportation, healthcare, and education. This report serves as a benchmark to measure future progress in achieving civil rights for the disability community.

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Since the recent passing of Judy Heumann, the iconic Disability Rights activist, I have spent much time contemplating the very notion of change itself. Change is inevitable yet within the arc of the disability narrative we have seen profound transformations happening over years starting with civil rights to the evolution of business, representation, and a revolution through a broad cultural zeitgeist that is redefining our understanding of the disability experience.

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The home care workforce grew between 2008 and 2019, from 840,000 to more than 1.4 million. However,  the pace of that growth slowed after 2013. At the same time, the number of Medicaid-covered patients seeking home care rocketed upwards, rising from just over 2 million in 2008 to more than 3.2 million by 2019. The result: an 11.6% drop in the availability of home care workers for every 100 patients seeking their help.

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 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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