Immigration and the Direct Support Workforce

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families.  One is a shortage of caregivers and direct support professionals, which is likely to get worse.  

Tara Watson at Brookings:

It is estimated that more direct care workers will be needed in the next decade and beyond. The Bureau of Labor Statistics projects 3% employment growth in the average occupation 2023-2032, but 22% for home health and personal care aides, with about 700,000 openings projected annually. One 2017 estimate from MIT researcher Paul Osterman predicted a shortfall of 151,000 paid direct care workers by 2030 and 355,000 workers by 2040. Chronic shortages have been exacerbated by the pandemic. More than half of nursing homes surveyed in 2022 reported that they limited new patient admissions due to nursing shortages. Even if U.S.-born participation in this occupation can be stabilized, there will still be a severe need for direct care workers as the population ages.

Economic research supports the critical importance of immigrants in the care workforce. Immigrants are important to nursing home staffing and quality of care. They also reduce flows into nursing homes by facilitating aging in place of U.S.-born older adults through their employment as home health aides. (Immigrants are also disproportionately represented among doctors, and could continue to help address chronic shortages in nursing.)

Access to Home and Community-Based Services

The Politics of Autism includes an extensive discussion of insurance and  Medicaid services for adults with intellectual and developmental disabilities. Home and Community-Based Services (HCBS) are particularly important.

From HHS:

“Ensuring Access to Medicaid Services” (“Access Rule”) creates historic national standards that will allow people enrolled in Medicaid and the Children’s Health Insurance Program (CHIP) to better access care when they need it and also strengthens home and community-based services (HCBS), which millions of older adults and people with disabilities rely upon to live in the community. This landmark final rule will set minimum threshold standards for payments to the direct care workforce, create meaningful engagement with Medicaid consumers, and advance provider rate transparency.
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The Access Rule strengthens HCBS by requiring that at least 80 percent of Medicaid HCBS payments directly compensate direct care workers rather than cover “administrative overhead.” The rule also requires states to report how they establish and maintain HCBS wait lists, assess wait times, and report on quality measures. This policy would allow states to take into account small providers and providers in rural areas, promote training and quality, and ensure smooth implementation with additional data collection prior to full phase-in.

It protects the health and safety of people who receive HCBS by improving states’ incident management systems and requires states to have a grievance process for all HCBS participants.

See here for a full description of the final rule and a link to the rule text. 

Action on the Direct Care Workforce

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families.  One is a shortage of caregivers and direct support professionals, which is likely to get worse.  

From HHS:

Today, the U.S. Department of Health and Human Services (HHS), through the Administration for Community Living (ACL), announced several new initiatives and resources from ACL’s Direct Care Workforce (DCW) Strategies Center to address the dire shortage of professionals who provide the services many older adults and people with disabilities need to live in the community. These include two technical assistance opportunities to help states strengthen their systems for recruiting, retaining, and developing direct care workers; a national hub to connect states, stakeholders and communities to best practices and other resources related to the direct care workforce; and a webinar series for states and stakeholders focused on a range of direct care workforce topics. These initiatives will help sustain the impact of the $37 billion in American Rescue Plan funding invested to date by states in home and community-based services, and support the comprehensive set of actions and investments included in the President’s executive order to improve care.

Direct Support Workforce Crisis

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families.  One is a shortage of caregivers and direct support professionals, which is likely to get worse.  

The Family and Individual Needs for Disability Supports (FINDS) survey:

• 68% of family caregivers reported that the direct support workforce crisis had negatively affected the supports that their family members received. 
• 81% of family caregivers provided more supports due to decreased available supports and services. 
• 35% reported that their family member is on a waiting list for government-funded supports and services. 
• 73% paid more out-of-pocket, and 37% report difficulty paying for supports and services. 
• Participants reported that their family members are experiencing various negative effects from the decreased availability of supports, including access to therapies, having work hours cut, losing their job, or having schools/daycares cut hours or close. 
• Family caregivers reported that the negative effects related to their caregiving duties have increased since the 2017 FINDS Survey. 
• The number of caregivers who reported feeling very or extremely stressed has increased from 48% in 2017 to 54% in 2023. 
• Nine in ten caregivers reported some impact on their employment related to their caregiving responsibilities. 
• 41% reported leaving employment to provide supports to their family member. 
• Half of all participants (50%) agreed or strongly agreed that they were under financial strain due to providing supports.

Most people receiving supports were between the ages of 22 and 64 (59%), 39% were aged 21 and under, and 2% were 65 and older. Six in ten (59%) were reported to have an intellectual disability, 50% were reported to have autism spectrum disorder (ASD), 40% had a communication delay or speech disorder, 36% had any developmental delay, and 36% had a mental or behavioral health diagnosis. Fewer than a third were reported to have a variety of developmental disabilities

The State of Direct Support

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families.  One is a shortage of caregivers and direct support professionals, which is likely to get worse.  

From ANCOR'S 4th annual State of America’s Direct Support Workforce Crisis survey:

This year’s survey garnered responses from 581 distinct organizations delivering services in 45 states and the District of Columbia. The following are among the key findings from the State of America’s Direct Support Workforce Crisis 2023: 

• 95% of respondents indicated they had experienced moderate or severe staffing shortages in the past year. 
• More than half (54%) of respondents indicated they deliver services in an area where few or no other providers deliver similar services. 
• More than three-fourths (77%) of respondents reported turning away new referrals in the past year due to ongoing staffing shortages. 
• 72% of respondents reported that they had experienced difficulties adhering to established quality standards due to ongoing staffing challenges. 
• Of those respondents that reported offering case management services, fully three-fourths indicated they had experienced difficulties connecting people with services due to a lack of available providers.

The report also notes: "Providers want to pay more, but lack the funding needed to do so, leaving the median direct support professional with an hourly wage around $14.50. In turn, providers at the national level are left to grapple with turnover rates hovering around 44% and vacancy rates in excess of 20%. "

At Time, Hari Srinivasan explains an underappreciated effect of high staff turnover:

The high turnover in the lower-paid and high-stress disability support profession results in fleeting connections, leading to a lack of continuity needed to form lasting relationships for people with autism. Even the most wonderful of support staff will last a few years at best, before they completely disappear from life.

I’ve seen this personally: As someone who has autism, I’ve experienced a revolving door of over a 100 support staff—and I plan on living for many more years. The reality is that any person with autism is a client, a case, a job to the people they tend to interact with most—and that’s not the same as family or friends. A higher staff turnover is especially ubiquitous for autistics who are considered “challenging cases,” as staff naturally look to move to a higher paying job or an “easier case,” as soon as they can. Consequently, as autistics age, their world can become increasingly lonely, leaving them even more vulnerable on multiple fronts.

Low Pay Leads to Shortages of Direct Support Professionals

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families.  One is a shortage of caregivers and direct support professionals, which is likely to get worse.  

Tony Thomas at Crain's Cleveland Business:

Welcome House, along with over 200 nonprofit organizations across the state, are seeking the help of Gov. Mike DeWine and our Ohio state legislators by asking for a permanent increase in Medicaid funding so that we can invest in increasing what we're able to pay our direct support staff.

To put it in perspective, we're down 80 staff members this year. And let's be honest, the work we do is not easy — our DSPs are responsible for tasks like cooking and cleaning, medication adherence, even dressing and assisting individuals with personal hygiene. Shifts include early mornings, overnights and weekends. Some days are happy, many days are tough, but regardless of the situation, we are in constant need of caring, qualified staff to provide the support the individuals we serve deserve (and frankly, can't live without).

This is made even more difficult by the fact that we're only able to offer $12 per hour. It's near impossible to find qualified, dedicated staff when a more comfortable job at a big-box retailer or chain coffee shop pays almost double. Not being able to pay our staff an adequate wage means we must turn down families and individuals in desperate need of our services.

 Clarissa Donnelly-DeRoven at NC Health News:

It’s hard to quantify the shortage of these workers because of poor data collection at the federal and state level.

One way to get a scope of the issue locally is to compare the hours of service people have been approved to receive through North Carolina’s Medicaid Innovations Waiver — for people who have disabilities that require a significant level of care — to the number of hours the state actually pays for.

Of all the services authorized between 2019 and 2021, just about 79 percent of the available dollars were paid out, according to data that was obtained by North Carolina Health News through a public records request.

That doesn’t mean 79 percent of people got services, or that everyone got 79 percent of the services they needed. Some people likely received all of their hours while others got nothing, but the data lacks these details.

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For all this, direct service providers get paid about $11.50 an hour on average, according to a pay study conducted by policy workers and advocates in the state. The wage has only risen about two dollars since 1998, when a study by researchers at UNC Charlotte found the average pay to be about $9.13 an hour.

“That is abysmal,” said Pat Porter, who is currently working on the pay study and serves as a policy adviser for the state legislature. She also headed up the developmental disabilities division within the state’s health department for nearly 15 years. “It is certainly not a living wage.”

Surveys of the service provider workforce have found that the job is primarily done by young women of color, especially immigrants, without college degrees. Advocates argue that’s a reason wages have remained so low for so long.

HCBS Problems and the Pandemic

The Politics of Autism includes an extensive discussion of insurance and  Medicaid services for adults with intellectual and developmental disabilities. Home and Community-Based Services (HCBS) are particularly important.

 A November 16 release from the National Council on Disability:

Today the National Council on Disability releases a report examining weaknesses in the home- and community-based services (HCBS) ecosystem, taking stock of the preventable disproportionate death toll in congregate settings during the COVID-19 pandemic.

Strengthening the HCBS Ecosystem – Responding to Dangers of Congregate Settings during COVID-19 builds upon findings in NCD’s 2021 Progress Report: The Impacts of COVID-19 on People with Disabilities and 2012 report Deinstitutionalization: Unfinished Business. The report illustrates the interworking of the HCBS ecosystem, including the direct care workforce and an adequate accessible, affordable housing inventory, and how HCBS is safer, costs less, and is the preference of most individuals over institutional settings.

Currently, 820,000 people with disabilities remain on wait lists to transfer out of institutional settings. During the first year of the pandemic, 35,000 nursing home residents died of COVID-19, representing 42% of the total deaths in the U.S.

“For many people with disabilities during the pandemic, congregate settings had a devastating impact,” said NCD Chairman Andrés Gallegos. “In many instances, social distancing wasn’t achievable and the inability to transition out of such a setting became a death trap.”

NCD found that approximately 14 million Americans of all ages need HCBS, with 40% being adults under 65 years old, and people younger than 30 years old making up the fastest growing nursing home population.

“Severe shortages of direct care workers and available affordable, accessible housing are just two examples are longstanding fragilities in the HCBS ecosystem,” said the Chairman. “The neglect in addressing these matters led to the preventable deaths of scores of Americans with disabilities and will again if policymakers don’t act.”

The report offers NCD’s key recommendations to create a new paradigm – the Community Living Bias – with pointed recommendations for policymakers for Medicaid, the direct care workforce, housing policy, hospital discharge planning, COVID-19 flexibilities and waivers, and data collection.

From the report:

 Intersectional inequities are also present in an analysis of HCBS outcomes and successful interventions. A 2019 study focused on the potential of HCBS waivers to reduce disparities in unmet need among children of color with autism spectrum disorder.136 States with 1115 waivers from the Federal Government offered expanded eligibility for HCBS, which differed in the “generosity” (i.e., the amount of services offered, number of participants allowed and duration). The study found that waivers with the highest “generosity” were most effective in closing disparities between Black and White children with autism.137 The State of Washington also used 1115 waivers to expand access to HCBS services to “pre-Medicaid” individuals to divert institutionalization.138 These findings provide important implications that the presence of a waiver alone, without consideration of the inequitable baseline, may not address racial, ethnic, age, or other inequities.

• 136 LaClair, Michelle, David S. Mandell, Andrew W. Dick, Khaled Iskandarani, Bradley D. Stein, and Douglas L. Leslie. “The effect of Medicaid waivers on ameliorating racial/ethnic disparities among children with autism.” Health services research 54, no. 4 (2019): 912-919. Strengthening the HCBS Ecosystem 85 
• 137 Id.
• 138 Anthony, Stephanie, Arielle Traub, Sarah Lewis, Cindy Mann, Michelle Herman Soper, and Stephen A. Somers. “Expanding Access to HCBS for “Pre-Medicaid” Individuals to Prevent or Delay Nursing Facility Utilization: A Strategy for Strengthening Long-Term Services and Supports.”

 

Worsening Shortage of Direct Support Professionals

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families.  One is a shortage of caregivers and direct support professionals, which is likely to get worse.  

From ANCOR:

For the third consecutive year, ANCOR has measured the impact of the direct support workforce crisis on community providers and their ability to provide high-quality community-based services for people with intellectual and developmental disabilities (I/DD). Although our research indicates that this was a significant challenge long before the COVID-19 pandemic, data from the 2022 State of America’s Direct Support Workforce Crisis confirms that these problems have not only been amplified by the pandemic but are also at the root of service and program closures, service launch delays, struggles adhering to quality standards and more. The results of our 2022 survey reveal that this workforce emergency is now to the point of denying access to services and further threatening the quality of services for people with I/DD.

Over the course of a four-week period beginning in August 2022, ANCOR fielded a survey across its provider network that garnered 718 responses. In the broadest terms, what we found is that providers are unable to attract and retain DSPs at a rate that, if left unaddressed, has the potential to completely collapse the system of services as we know it.

Key findings from ANCOR’s 2022 State of America’s Direct Support Workforce Crisis survey include that:

• 83% of providers are turning away new referrals, a 25.8% increase since the beginning of the pandemic.
• 63% of providers are discontinuing programs and services, a staggering 85.3% increase since the beginning of the pandemic.
• 92% of providers are struggling to achieve quality standards, a 33.3% increase since the beginning of the pandemic and a 13.6% increase in the last year alone.
• 71% of case managers are struggling to find available providers, citing difficulty to connect families to long-term services and supports due to lack of available providers.

Closures and Waiting Lists

In The Politics of Autism, I discuss state services for people with intellectual and developmental disabilities.

 Dan Goldberg at Politico:

Private agencies that provide services for the intellectually and developmentally disabled have long warned that, without fresh state and federal funding, they would be unable to provide housing and staff support to the growing number of Americans who need care.

Over the last 12 months, the Covid-19 pandemic’s lingering effects and once-in-a-generation inflation have turned dire predictions into sobering truths, and agency directors, who for years hobbled along on shoestring budgets, have done in 2022 what not long ago would have been unthinkable: closed their doors.

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Across the country, more than three-quarters of providers said they’ve turned away referrals, and more than half have discontinued programs, according to a survey from the American Network of Community Options and Resources, an advocacy group.

What happens to the residents? They live with siblings or their elderly parents, some who are themselves in need of care, or they become wards of the state, sent to live in larger and larger facilities, the kind of institutionalized settings the country swore off nearly 50 years ago.

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Most agencies rely on state and federal Medicaid money to pay employees and can’t increase salaries to compete with the retail or food-services industries because Medicaid rates are set by the state. Though that’s always been a challenge, it’s exacerbated during periods of high inflation when wages in other sectors rise and the cost of living increases, making it that much more tempting for employees to take a new job that pays a couple dollars more an hour.

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Turnover rates have climbed to nearly 50 percent nationally, meaning half of all employees need to be replaced every year, a huge expense in time and training.

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Most states were helped by last year’s American Rescue Plan, which temporarily boosted federal matching funds for home- and community-based services. Many providers used the bump to supplement wages or offer pandemic signing bonuses, but that money was never intended to be a permanent fix.

“We’ve offered bonuses, but [employees] know that’s not permanent,” Wilush said. “When Target goes to $24 an hour, it’s really hard to compete with that.”

The Biden administration sought to shore up those programs, proposing $400 billion in new money for home- and community-based services in the Democrats’ social spending package. House Democrats put about $150 billion in their version that passed last year — but it was not included in the reconciliation package that the Senate passed this week, meaning it is unlikely providers will see new money any time soon.

Waiting Lists and Shortages

The Politics of Autism includes an extensive discussion of insurance and  Medicaid services for adults with intellectual and developmental disabilities. Home and Community-Based Services (HCBS) are particularly important.

The ANCOR Foundation and United Cerebral Palsy have published the Case for Inclusion 2022.  Some findings:

• Nationally, the average DSP turnover rate in 2020 increased by about one percentage point to 43.6%. Meanwhile, vacancy rates for full-time direct support positions increased from 8.5% in 2019 to 12.3% in 2020—a roughly 45% increase. 
• As of 2018, 16 states and the District of Columbia had closed their last remaining large, state-run institutions. Joining the ranks of states to have fully deinstitutionalized since last time the Case for Inclusion reported these data are Montana and Tennessee. 
• 1 in 5 (21.1%) people with IDD who received employment or day supports were participating in an integrated employment service. Within the 33 states that report that they collect data on the number of people working, 19.3% of individuals participating in integrated employment services were working for pay. 
• There were 589,940 people on states’ waiting lists for home- and community-based services nationally. Nearly 4 in 5 (78%) of those waiting were concentrated in just five states. Because this key findings report cannot cover every data point across all 80 measures contained in the Case for Inclusion’s seven main issue areas, we invite you to learn more and explore the data at caseforinclusion.org 

The report confirms that Texas is a hellhole for people with disabilities: 

• "Strikingly, more than 78% of people on states’ waiting lists live in the five states with the largest waiting lists: Texas (323,434), Ohio (68,644), Louisiana (27,509), Florida (21,864) and Illinois (19,354)."
• "States that had the largest number of PRFs in operation were Texas with 13, Ohio with eight and Illinois with seven. In terms of the number of people living in PRFs, Texas and Illinois had the dubious distinction of topping that list, with 2,969 and 1,664 residents, respectively, followed by New Jersey, with 1,325 people with IDD living in a PRF."

Explore 80 data measures for all 50 states and DC by issue at https://t.co/vMRqpyzHq5 or by state https://t.co/iBTzzisdxg #CaseforInclusion2022

— ANCOR (@TheRealANCOR) March 8, 2022

Hassan Bill on Direct Support Professionals

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families.  One is a shortage of caregivers and direct support professionals, which is likely to get worse.  And for policymakers, another problem is a lack of data.

A release from Senator Haggie Hassan:

U.S. Senators Maggie Hassan (D-NH) and Susan Collins (R-ME), both members of the Senate Committee on Health, Education, Labor, and Pensions, introduced bipartisan legislation today to address the critical need for more Direct Support Professionals in the workforce. Direct Support Professionals provide vital support to individuals who experience disabilities, like assisting with communication, providing on-the-job coaching, and helping with daily living needs. Unfortunately, home and community based service providers in New Hampshire, Maine, and across the country are struggling to recruit and retain Direct Support Professionals.

To compound this problem, the Bureau of Labor Statistics system that is used to analyze workforce trends classifies Direct Support Professionals under the broader category of “home health care aide,” which makes it impossible to accurately track workforce trends for Direct Support Professionals. The bipartisan Recognizing the Role of Direct Support Professionals Act would revise the Bureau of Labor Statistics’ classification system, ensuring better data on these pressing workforce challenges. Senator Kirsten Gillibrand (D-NY) is also a cosponsor of the legislation, and a companion bipartisan bill led by Representative Kathleen Rice (D-NY-04) was introduced today in the House of Representatives.

“As the mother of a son who experiences severe disabilities, I know firsthand what a difference Direct Support Professionals can make in the lives of those that they work with,” Senator Hassan said. “Direct Support Professionals not only help with day-to-day tasks, but they also help ensure that people who experience disabilities are fully included in their communities. Their tireless work can make a world of a difference for people who experience disabilities, their families, and their entire communities, and we need more Direct Support Professionals in the workforce who can provide such critical, high-quality care. Our bipartisan legislation will help address this workforce shortage, and I will continue working across the aisle to ensure that people with disabilities have the support that they need to thrive.”
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The bipartisan bill introduced today builds on Senator Hassan’s ongoing work to support home health care workers and Direct Support Professionals. Senator Hassan recently joined Senator Collins in cosponsoring a bipartisan resolution designating September 8 through September 14 as National Direct Support Professionals Recognition Week to recognize the contribution of Direct Support Professionals (DSPs) to the nation’s health care system. Last fall, Senator Hassan joined her colleagues in introducing legislation to address the demand for direct care workers by strengthening support for workers who provide daily living assistance to millions of older Americans, people with disabilities, and others with chronic care needs, and she visited Senior Helpers of the Greater Seacoast to discuss the importance of investing in workforce development initiatives to address these sorts of job shortages in the state.

For a one-pager on Senator Hassan and Collins’ bill, click here. For text of the legislation, click here.