The Survey Of Adults With Employer-Sponsored Health Insurance – the first partnership project conducted jointly by the Kaiser Family Foundation and the Los Angeles Times – explores the attitudes and experiences of adults with employer-sponsored health insurance (ESI), including views of their health plans and affordability challenges related to premiums, deductibles, and unexpected medical bills.

The survey takes a special look at those in high deductible plans (including those paired with a health savings account or HSA), those with chronic health conditions, and those with lower incomes. It also examines factors related to health plan decision-making and cost-conscious health care shopping behaviors, as well as overall views of the U.S. health care system.

Read The Los Angeles Times’ coverage:

Health insurance deductibles soar, leaving Americans with unaffordable bills

Three kids, a health plan and $15,000 in medical debt: A working family tries to make ends meet

Soaring insurance deductibles and high drug prices hit sick Americans with a ‘double whammy’

Rising health insurance deductibles fuel middle-class anger and resentment

Americans’ struggles with medical bills are a foreign concept in other countries

Trying to shop for medical care? Lots of luck with that

Not everyone has eye-popping deductibles: How one union kept medical bills in check

Since the passage of the Affordable Care Act (ACA) in 2010, much attention has been paid to the parts of the U.S. health insurance landscape that were most directly impacted by the law, including the individual insurance market and expanded Medicaid programs in some states. Yet, the number of people covered by employer-sponsored health insurance in the U.S. far exceeds the number covered in the individual market or by any government program. In 2017, about 156 million people had employer-based coverage, representing almost half the total U.S. population and 60 percent of non-elderly adults.¹  Surveys of employers point to the growing cost burden of health insurance for this population. Between 2008 and 2018, premiums for employer-sponsored insurance plans increased 55 percent, twice as fast as workers’ earnings (26 percent). In addition, workers are finding themselves on the hook for bigger deductibles before their insurance will kick in. Over the same time period (2008-2018), the average health insurance deductible for covered workers increased by 212 percent.² 

Against this backdrop, the Kaiser Family Foundation partnered with the Los Angeles Times to conduct a representative survey of adults with employer-sponsored health insurance.³  Some key themes from the survey are summarized here, and a full report of the findings follows.

Overall, the survey finds that most people with employer-sponsored insurance (ESI) are generally satisfied with their health plans, and large shares say they feel “grateful” and “content” about their insurance while fewer say they are “angry” or “frustrated.” However, insurance does not offer iron-clad protection against health care affordability challenges. Four in ten report that their family has had either problems paying medical bills or difficulty affording premiums or out-of-pocket medical costs, and about half say someone in their household skipped or postponed some type of medical care or prescription drugs in the past year because of the cost. Seventeen percent say they’ve had to make what they feel are difficult sacrifices in order to pay health care or insurance costs; for some, the sacrifices they report making are extreme.

The experiences and attitudes of people with employer coverage differ vastly depending on whether they are in a higher or lower deductible plan. The higher the deductible, the more likely an individual is to have negative views of their health plan, and the more likely they are to experience problems affording care or to put off care due to cost. One reason people with higher deductibles are having trouble affording care is that many of them do not have enough savings to cover the full amount of their deductible. Among those in the plans with the highest deductibles (at least $3,000 for an individual or $5,000 for a family), over half say the amount of savings they could easily access in the short term is less than the amount of their deductible.

Another group that is particularly vulnerable to health care affordability issues are those with chronic conditions. Just over half (54 percent) of those with employer-sponsored coverage say that someone covered by their plan has a chronic condition such as hypertension, asthma, a serious mental health condition, or diabetes. About half of this group reports that their family has had problems paying medical bills or difficulty affording premiums or out-of-pocket costs, compared to about three in ten of those in families without a chronic condition. The combination of a chronic condition and a high deductible leads to even higher rates of problems and worries. For example, three-quarters of those in the highest deductible plans who say someone on in their family has a chronic condition say that a family member in their household has skipped or delayed some type of medical care or prescription drugs for cost reasons in the past year.

The survey also finds that cost has taken on greater importance in health insurance decision-making over the last decade and a half. When asked to choose the most important feature in a health plan, about six in ten people with employer coverage choose cost-related factors (low premiums, deductibles, or co-pays), while about a quarter choose coverage-related factors (choice of providers or range of covered benefits). These shares are essentially the opposite of what they were in 2003, when one-third chose cost-related factors and six in ten chose range of benefits or choice of providers. Similarly, among those whose employer offered a choice of plans, the share who say they picked their plan based on the cost increased from 21 percent in 2003 to 36 percent in the current survey.

Seven in ten people with employer coverage report engaging in some type of cost-conscious health care shopping behavior in the past 12 months, the most common of which is asking for a generic instead of a brand-name drug (47 percent). Less common behaviors are those that might actually lead to lower prices on services, including shopping around at different providers to find the best price for a medical service (17 percent) and trying to negotiate with a provider for a lower price (9 percent). One selling point of high deductible health plans is that they may incentivize enrollees to engage in more cost-conscious behaviors, including price-based shopping. The survey finds mixed evidence that this is the case; while the lowest rate of reporting these behaviors occurs among those in plans with no deductible, with a few exceptions, those in high deductible plans are not significantly more likely than those in lower deductible plans to report engaging in price-based shopping. In addition, those in high deductible plans paired with a health savings account (HSA plans) are not significantly more likely than those in plans with similar deductible levels to report shopping for lower-priced health care services. Overall, those enrolled in HSA plans – who make up 18 percent of adults with employer coverage – are more likely to view them as a way to pay for current medical bills than as a way to save money for the future.

Confusion and lack of access to cost information can also be a barrier for individuals to engaging in cost-conscious health care behaviors. Two-thirds say it is difficult to find out how much medical treatments and procedures provided by different doctors and hospitals would cost them, and over four in ten say they have had difficulty understanding how much they will have to pay out of their own pocket when they use care.

Finally, while most people with employer insurance feel that the cost of health care for people like them is too high, more say the current U.S. health insurance system works well for people with employer coverage than say it works well for people on Medicare or Medicaid or those who purchase their own insurance. Asked who is to blame for high costs, majorities point the finger at pharmaceutical and insurance companies, while fewer see hospitals, doctors, or employers as deserving of blame.

Sixty percent of adults ages 18-64 in the United States have health insurance coverage through an employer or union. Census data show that, compared to the general population, these adults have higher incomes and education levels and are more likely to be White or Asian and less likely to be Black or Hispanic.⁴ 

The survey finds that most people with employer-sponsored health coverage (73 percent) say they pay at least part of their premium for their insurance, while 16 percent say their employer pays the whole thing. When asked about their annual deductible for medical care, 15 percent say they have no deductible and 44 percent report a deductible of less than $1,500 for an individual or less than $3,000 for a family (defined for the purposes of this report as “lower deductible”). Four in ten (41 percent) report having plans with higher deductible amounts, including 20 percent with deductibles between $1,500 and $2,999 for an individual or between $3,000 and $4,999 for a family (“higher deductible”) and 21 percent with deductibles of at least $3,000 for an individual or $5,000 for a family (“highest deductible”). About one in six (18 percent) report having a higher or highest deductible plan paired with a health savings account (HSA).

Nearly two-thirds (64 percent) of people with employer coverage say their insurance covers other family members in addition to themselves, while 36 percent report having single coverage. While nearly nine in ten (88 percent) describe their own health status as “excellent,” “very good,” or “good,” just over half (54 percent) say that they or another family member covered by their plan has a chronic condition, the most common being hypertension or high blood pressure (30 percent), a serious mental health condition (15 percent), asthma or other breathing problems (14 percent), and diabetes (11 percent).

Overall, most people with employer coverage report being happy with their insurance. Nearly seven in ten (68 percent) give their health plan a grade of “A” or “B,” and large shares say the words “grateful” (72 percent) and “content” (69 percent) describe the way they feel about their insurance, while far fewer identify with words like “frustrated” (26 percent), “confused” (23 percent), or “angry” (14 percent). More than half (58 percent) say they think their employer is offering them the best health insurance they can afford. However, a substantial share – 42 percent – believe their employer could be providing something better.

It’s notable that these views differ greatly depending on the deductible level of an individual’s plan. For example, among those in the highest deductible plans, over half (55 percent) give their plan a grade of “C” or below, and half (51 percent) say their employer could be providing something better. While positive emotions still outweigh negative emotions for this group, the gap is much narrower, with 58 percent saying they feel “grateful,” and 50 percent “content,” while four in ten say they feel “frustrated,” 34 percent “confused,” and 23 percent “angry.”

In addition, while most people in plans with no or lower deductibles say their health insurance has “stayed about the same” in the past 5 years, four in ten (39 percent) of those in higher deductible plans and half of those in the highest deductible plans say their insurance has “gotten worse.”

While many employers pay for a large share of covered workers’ health insurance premiums, the survey finds that employer-sponsored health insurance does not offer iron-clad protection against health care affordability challenges. Four in ten adults with employer coverage say that in the past year they had problems paying medical bills or difficulty affording their premium, deductible, co-pays, or an unexpected medical bill for themselves or a family member. When this group is asked to say which has been the biggest problem for their family, medical bills they had to pay before meeting their deductible (31 percent) and unexpected medical bills (23 percent) top the list, while fewer say the biggest burden is their prescription drug costs (11 percent), medical visit co-pays (10 percent), or health insurance premiums (8 percent).

Among the 40 percent who report problems affording some type of health care cost in the past year, many report making various sacrifices in order to pay these costs. Two-thirds of this group (representing about a quarter of all adults with ESI) say they put off vacations or major household purchases or cut back spending on food, clothing, or basic household items. About half (one in five among the total) say they increased their credit card debt or used up all or most of their savings to pay for health care. One-third (14 percent of total) say they took on an extra job or worked more hours and a quarter (10 percent of total) reporting borrowing money from friends or family or taking money out of a long-term savings account. Smaller shares say they took out a loan, sought the aid of a charity or non-profit, changed their living situation, or used the internet to raise funds to pay for medical care.

In addition, 41 percent of those who had difficulty affording health care costs (17 percent of all adults with employer-sponsored insurance) say they feel they have had to make a difficult sacrifice in order to pay health care or insurance costs in the past 12 months. When asked to describe in their own words the most difficult sacrifice they have made, responses ranged from cancelled vacations, to skipped meals, to increased debt, to forgoing needed medical care.

Unpaid medical bills can also lead to longer-term financial effects for some people. About one in five (19 percent) say that someone in their household has been contacted by a collection agency in the past 12 months because of medical bills, and 9 percent say they have at some point declared personal bankruptcy because of medical bills (including 2 percent who say they did so in the past 12 months).

In addition to making sacrifices to afford care, about half (51 percent) of adults with employer health coverage report that they or someone in their household has skipped or delayed some type of medical care or prescription drugs in the past 12 months because of the cost. This includes about a third each who report relying on home remedies or over-the-counter drugs instead of going to see a doctor (35 percent) or putting off or postponing needed care (33 percent), about a quarter (24 percent) who report not getting a recommended medical test or treatment, and about one in five (18 percent) who report not filling a prescription, cutting pills in half, or skipping doses of medicine because of the cost.

Both difficulty affording health care expenses and forgoing or delaying care due to cost are more commonly reported among certain groups, including those with lower incomes, those in higher deductible plans, and those who say someone covered by their plan has a chronic health condition. For example, while 40 percent of all adults with employer coverage say they’ve had problems paying medical bills or difficulty affording health care or insurance costs for themselves or their family in the past year, the shares are higher among those with annual household incomes below $40,000 (65 percent), those who say someone covered by their plan has a chronic condition (49 percent), and those in the highest deductible plans (49 percent). Similarly, while about half overall report that someone in their household skipped or postponed some type of health care in the past year because of the cost, the share rises to around six in ten among those with the lowest incomes, the highest deductibles, or a chronic condition.

As noted above, people with employer sponsored health plans that have high deductibles are more likely to report problems affording health care, and more likely to postpone or forgo health care services for cost reasons. One contributing factor may be the fact that many people in higher deductible plans do not have enough savings to cover the full amount of their deductible. When asked how much they have in savings that could easily be accessed in the short term, three in ten (31 percent) of those in higher deductible plans and more than half (56 percent) of those in the highest deductible plans name an amount that is less than the amount of their deductible.

In addition, most people enrolled in plans with high deductibles say they would not be able to pay a bill equal to the full amount of their deductible without going into debt. When asked how they would pay an unexpected medical bill equal to the amount of their deductible, one-third of those in plans with high deductibles say they would either pay the bill at the time of service or put it on a credit card and pay it off at their next statement. About half say they would go into some type of debt to pay the bill, either by putting it on a credit card and paying it off over time (27 percent), setting up a payment plan with the provider (17 percent), or borrowing money from a bank, payday lender, or friends and family (5 percent). One in six (16 percent) say they would not be able to pay such a bill at all.

Those in high deductible plans who have lower incomes are even less likely to say they could afford such a bill. Among those in high deductible plans who have annual household incomes of $40,000 or less, one-third (32 percent) say they would not be able to pay a bill in the full amount of their deductible at all, while just 14 percent say they would pay it off right away or at the next credit card statement.

Another group that is particularly vulnerable to health care affordability issues are people with chronic conditions. Those who say someone covered by their plan has a chronic health condition (a group that makes up 54 percent of people with employer plans) are about twice as likely as others to report problems paying medical bills (36 percent versus 16 percent). They are also much more likely to say they’ve had difficulty affording medical bills before meeting their deductible, unexpected medical bills, co-pays, and monthly health insurance premiums.

Drilling down into the consequences of these affordability problems reveals more about the financial burden of health care on families with chronic conditions. Overall, more than one-third of those with a chronic condition in the family say they put off vacations or major household purchases (36 percent) or cut back spending on food, clothing, or basic household items (35 percent) in order to pay for health care and insurance costs. Nearly three in ten (28 percent) say they increased their credit card debt, about a quarter (26 percent) say they used up all or most of their savings, and one in five (19 percent) say they took on an extra job or worked more hours in order to pay for health care. Other consequences, such as borrowing money, seeking charity aid, or changing living situation were less common, but still occurred at about twice the rate among people in families with a chronic condition compared to those without such a condition.

Those with chronic conditions are also more likely to report forgoing or delaying health care because of the cost, and this is particularly true for those in plans with high deductibles. For example, 42 percent of those who say someone covered by their plan has a chronic condition say there was a time in the past year when they or another family member put off or postponed getting health care they needed, compared with 23 percent of those without a chronic condition. Among those with chronic conditions who are in the highest deductible plans, the share rises to 60 percent. Similarly, three in ten (31 percent) of those in families with a chronic condition say they skipped a doctor-recommended test or medical treatment in the past year for cost reasons, twice the share as among those with no chronic condition, and rising to 44 percent among those with chronic conditions in the highest deductible plans. Overall, 60 percent of all those with a family chronic condition say someone in their household skipped or postponed some type of care or medicine for cost reasons, rising to 75 percent among those in the highest deductible plans.

The combination of a chronic condition and a high deductible can also lead families to worry about affording health care in the future. For example, among those with a chronic condition in the family, about half of those in the highest deductible plans say they are not confident in their ability to pay for the usual medical costs they and their family require, and almost two-thirds are not confident they could pay for a major illness.

The survey finds that at the same time premiums and deductibles have been rising for people with employer-sponsored coverage, cost has taken on greater importance in health insurance decision-making compared to previous years. For example, when asked to choose the most important feature in a health plan, one quarter cite a low monthly premium, 18 percent choose a low deductible, and 16 percent cite low co-pays, amounting to six in ten (59 percent) choosing a cost-related factor. About a quarter (26 percent) choose coverage-related factors including having a wide range of benefits (17 percent) or a wide choice of doctors and hospitals (10 percent). These shares are essentially reversed from a KFF survey conducted in 2003, when one-third of people with employer coverage chose cost-related factors as the most important feature in a health plan and six in ten chose a wide range of benefits or choice of providers.

Another trend point shows a similar pattern. Among those whose employer offered a choice of plans, the share who say they picked their plan based on the cost increased 15 percentage points, from 21 percent in 2003 to 36 percent in the current survey.

When asked about trade-offs between premiums and out-of-pocket costs, people with ESI are pretty evenly divided between saying they would prefer a plan with a relatively low monthly premium and higher out-of-pocket costs (52 percent) or one with a relatively high monthly premium and lower out-of-pocket costs (47 percent). However, those with higher household incomes lean towards lower premiums and higher out-of-pocket costs, while those with lower incomes lean in the opposite direction.

Despite this increased emphasis on cost, there is no great enthusiasm among people with employer plans for several trade-offs that might lower insurance premiums. About three-quarters say they would not be willing to pay a significantly higher deductible in exchange for a lower premium (perhaps because deductibles have risen so much already), and six in ten say they would not be willing to pay more for brand name prescription drugs. However, about half say they would be willing to accept a more restricted list of providers in exchange for lower premiums, and a large majority (85 percent) say they’d be willing to participate in a wellness program.

Just under one in five (18 percent) of all adults with employer coverage report being in a high deductible health plan paired with a Health Savings Account (HSA). Most of these people report making relatively modest contributions and having relatively modest savings in their HSA, particularly if they have lower incomes. For example, about half (47 percent) of people with an HSA plan say they have contributed less than $1,000 to their account in the past 12 months, and just 11 percent say they’ve contributed $5,000 or more. Among those with household incomes under $75,000 a year, 72 percent say they contributed less than $1,000 and just 3 percent put in at least $5,000.

Few seem to be able to save much money in these accounts over time. Overall, about three in ten (31 percent) say they have at least $2,000 saved in their HSA account, including 17 percent who have at least $5,000. Among those with incomes under $75,000, fewer – 22 percent – report having at least $2,000 saved, including one in ten (11 percent) who have at least $5,000.

The survey finds that individuals with HSA plans are more likely to view them as a way to pay for current medical bills (68 percent) than as a way to save money for the future (32 percent). This also bears out in their self-reported behaviors: while seven in ten (72 percent) say they have used their HSA to pay medical bills in the past 12 months, far fewer – 21 percent – say they use their HSA to invest in stocks, bonds, or mutual funds.

The survey asked about a list of seven different cost-conscious health care shopping behaviors, and finds that seven in ten people with ESI report engaging in at least one of these behaviors in the past 12 months. The most common of these are asking for a generic instead of a name brand drug (47 percent) and checking with a provider or health plan beforehand to find out the cost of a procedure (37 percent) or office visit (36 percent). Less commonly-reported behaviors are those that might actually lead to lower prices on health care services, including using an online tool to research the cost of different providers (23 percent), shopping around at different providers to find the best price for a medical service (17 percent), and trying to negotiate with a provider for a lower price (9 percent).

When consumers do try to negotiate prices, they report being successful less than half of the time; of the 9 percent who say they tried to negotiate with a provider, 43 percent say they were able to get a lower price while 57 percent say they were not.

One selling point of high deductible health plans is that they may incentivize enrollees to engage in more cost-conscious behaviors, including price-based shopping. The survey finds mixed evidence about whether this is occurring among people with employer-based coverage. While the lowest rates of reporting cost-conscious behaviors occur among those in plans with no deductible, those in high deductible plans are not significantly more likely than those in lower deductible plans to report engaging in most of the behaviors asked about in the survey. There are two exceptions: those in plans with high deductibles are more likely than those with lower deductibles to say they’ve asked for a generic rather than a name brand drug (55 percent versus 43 percent) and that they’ve used an online tool to compare the cost of different providers (30 percent versus 22 percent).

Similarly, HSA plans are viewed as a way to give consumers more control over their medical care and to encourage cost-conscious behaviors. To the extent that the survey finds people in HSA plans are engaging in more cost-conscious behaviors, it seems to be due to the deductibles associated with these plans rather than the savings account element, since those in high deductible plans without an HSA are not significantly more likely than those in HSA plans to report these behaviors.

Confusion and lack of access to cost information can also be a barrier for individuals to engaging in cost-conscious health care behaviors. Two-thirds of people with employer coverage say it is difficult to find out how much medical treatments and procedures provided by different doctors and hospitals would cost them. In addition, four in ten say they have had difficulty understanding what their health plan will cover (40 percent) and a similar share report difficulty understanding how much they will have to pay out of their own pocket when they use care (44 percent). 

When asked how well the current health insurance system in the United States works for various groups, fewer than a quarter of people with employer coverage say it works “very well” for any group, with the exception of wealthy people (70 percent). Still, a large majority believes the system works at least “somewhat well” for people with employer health coverage (79 percent), somewhat higher than the share who say the same about people covered by Medicare (65 percent) or Medicaid (63 percent), and substantially higher than the share saying the system works well for those who buy their own insurance (45 percent).

While almost two-thirds (65 percent) of people with employer coverage feel the current health insurance system in the U.S. works at least “somewhat well” for people like them, the percentage varies by income and deductible level. For example, 80 percent of those in a plan without a deductible say the system works well for people like them, compared to about half (48 percent) of those in the plans with the highest deductibles. Similarly, about three-quarters of those with annual household incomes of at least $100,000 feel the system works well for them, compared with half (49 percent) of those with incomes under $40,000.

While most feel the system is working well for them, about eight in ten (78 percent) people with employer coverage say the cost of health care for people like them is too high, with near-universal agreement across demographic groups. Asked who they blame for the high cost of health care, people mainly point to two groups that have long been named by the public as culprits of high costs: pharmaceutical and insurance companies, with about six in ten saying each deserves “a lot of blame.” About three in ten also place a lot of blame on hospitals (32 percent), the Affordable Care Act (29 percent) and the Trump Administration’s recent actions on health care (28 percent), while fewer place a lot of blame on doctors (15 percent). Echoing the finding that a large majority says they feel “grateful” for their employer-provided health insurance, just 7 percent say employers deserve a lot of blame for the high cost of health care, while two-thirds say employers deserve “just a little” or “no blame at all.”

Not surprisingly, there are partisan differences in the share who blame the Affordable Care Act (ACA) and the Trump Administration for the high cost of health care. Among those who feel costs for people like them are too high, about half (49 percent) of Democrats and just 4 percent of Republicans say the Trump Administration’s actions on health care deserve a lot of blame, while six in ten Republicans (59 percent) and just 10 percent of Democrats place a lot of blame on the ACA. Among independents, 27 percent say the ACA deserves a lot of blame and 21 percent say the same about the Trump Administration’s recent actions.

The Kaiser Family Foundation/Los Angeles Times Survey of Adults with Employer-Sponsored Health Insurance is based on interviews with a probability-based sample of 1,407 respondents between the ages of 18 and 64 who reported having health insurance from an employer or union (excluding those covered by a parent’s employer). Interviews were administered online and by telephone from September 25 through October 9, 2018 in English and Spanish.

Teams from the Kaiser Family Foundation and The Los Angeles Times worked together to develop the questionnaire and analyze the data, and both organizations contributed financing for the survey. Each organization is solely responsible for its content.

NORC at the University of Chicago conducted sampling, interviewing, and tabulation for the survey using the AmeriSpeak Panel, a representative panel of adults age 18 and over living in the United States. AmeriSpeak Panel members are recruited through probability sampling methods using the NORC National Sample Frame, an address-based sampling frame. Panel members who do not have internet access complete surveys via telephone, and internet users complete surveys via the web (for this survey, 60 respondents completed via phone and 1,347 via web).⁵  For this study, panelists with lower incomes were selected at disproportionately higher rates than those with higher incomes in order to allow for separate analysis of low-income people with employer-sponsored insurance.

The combined results have been weighted to adjust for the fact that not all survey respondents were selected with the same probability, to address the implications of sample design, and to account for systematic nonresponse along known population parameters. The first weighting stage addressed differences in probability of selection for the AmeriSpeak Panel and accounted for differential nonresponse to the AmeriSpeak screening interview. At this stage, an adjustment was also made to account for the oversampling of lower-income panelists and to account for differential nonresponse to the survey screening interview.

In the second weighting stage, the sample was adjusted to match known demographic distributions of the U.S. population ages 18-64 with employer-sponsored health insurance using the following parameters: age, age by sex, age by education, gender by education, education within non-Hispanic whites, race/ethnicity, Census Division, and household income. Demographic weighting parameters were based on the U.S. Census Bureau’s March 2018 Annual Social and Economic Supplement of the Current Population Survey.

The margin of sampling error including the design effect for the full sample is plus or minus 3 percentage points. All statistical tests of significance account for the effect of weighting. Numbers of respondents and margins of sampling error for key subgroups are shown in the table below. For results based on other subgroups, the margin of sampling error may be higher. Sample sizes and margins of sampling error for other subgroups are available by request. Note that sampling error is only one of many potential sources of error in this or any other public opinion poll.

Kaiser Family Foundation public opinion and survey research and NORC at the University of Chicago are both charter members of the Transparency Initiative of the American Association for Public Opinion Research.

1. State Health Facts. (n.d.). Retrieved April 2019, from https://modern.kff.org/state-category/health-coverage-uninsured/ ↩︎
2. Claxton, G., Rae, M., Long, M., Damico, A., Whitmore, H. (2018, October 3). Kaiser Family Foundation 2018 Employer Health Benefits Survey. Retrieved from https://modern.kff.org/health-costs/report/2018-employer-health-benefits-survey/ ↩︎
3. The survey includes adults ages 18-64 who say they get their health insurance from their own or a spouse’s employer or union. Those ages 65 and older are excluded since they are generally eligible for coverage through Medicare. ↩︎
4. State Health Facts. (n.d.). Retrieved April 2019, from https://modern.kff.org/state-category/health-coverage-uninsured/nonelderly-with-employer-coverage/ ↩︎
5. More details on NORC’s AmeriSpeak panel, including sample frame and recruitment methods, can be found at http://www.norc.org/Research/Capabilities/Pages/amerispeak.aspx.   ↩︎

Key Findings:

• The Affordable Care Act’s (ACA) protections for people with pre-existing medical conditions continue to weigh heavily on the minds of Americans, especially in light of the ongoing legal battle on the future of the ACA. The majority of the public say they do not want to see the Supreme Court overturn either the pre-existing condition protections (68 percent) or the entire health care law (54 percent); and most – including about half of Republicans – also say it is “very important” to them that the ACA provisions protecting people with pre-existing conditions remain law even after hearing that these protections may have led to increased insurance costs for some healthy people.
• A majority of Americans also say they are worried that they or someone in their family will lose coverage or will not be able to afford coverage in the future if the Supreme Court eventually hears the case and overturns either the entire health care law or the ACA’s protections for people with pre-existing conditions.
• Addressing health care costs are on the forefront of the public’s mind when it comes to their priorities for Congress with far more Americans saying targeted actions on prescription drug costs (68 percent), protections for pre-existing conditions (64 percent), and surprise medical bills (50 percent) are the “top priority” for Congress compared to broader reforms like implementing a national Medicare-for-all plan (31 percent), or repealing and replacing the ACA (27 percent).
• In light of recent legislative activity surrounding surprise medical bills, KFF polling finds broad support across partisans for the federal government taking actions to protect patients from having to pay the cost incurred from an inadvertent out-of-network provider including during a medical emergency and for treatment by an out-of-network doctor or specialist. Partisans do disagree on who should cover the cost of the care if the government takes action. While few (5 percent) say the doctor or provider should solely be responsible for the cost of the care, the public is divided in whether the insurance company, alone, should cover the cost (43 percent) or if the insurance company and the doctor or provider should share in covering the cost (47 percent).
• This month’s KFF Health Tracking Poll continues to find a majority of the public (56 percent) favor a national Medicare-for-all plan and half holding favorable views of the ACA. About four in ten hold unfavorable views of either a national Medicare-for-all plan (38 percent) or the ACA (38 percent).

Health Care Priorities for Congress

Poll: Most Americans want Congress to prioritize targeted actions that address personal health care costs; fewer cite broader reforms like Medicare-for-All and ACA Repeal

Lowering prescription drug costs and continuing the Affordable Care Act’s (ACA) protections for people with pre-existing conditions top the public’s priorities for Congress. Nearly seven in ten Americans (68 percent), including majorities of Democrats (77 percent), Republicans (66 percent), and independents (64 percent), say lowering prescription drug costs for as many Americans as possible is a “top priority” for Congress. This is followed closely by nearly two-thirds of the public (64 percent), including eight in ten Democrats (82 percent), six in ten independents (62 percent), and half of Republicans (47 percent) who say making sure the ACA’s protections for people with pre-existing health conditions continue is a “top priority” for Congress. Fewer – but still half – say protecting people from surprise medical bills is a “top priority.” This is consistent with the January KFF Health Tracking Poll released earlier this year, which found a similar ranking of the public’s priorities for Congress.

About three in ten say implementing a national Medicare-for-all plan (31 percent), repealing and replacing the ACA (27 percent), or expanding government financial help for those who buy their own coverage on the ACA marketplaces (26 percent) are top priorities for Congress. About half of Republicans say repealing and replacing the ACA is a top priority (52 percent), while a similar share of Democrats (47 percent) say implementing a national Medicare-for-all plan is a top priority.

The most recent KFF Health Tracking Poll continues to find that at least three-fourths of Democrats hold favorable views of the 2010 Affordable Care Act (ACA) while a majority of Republicans (77 percent) continue to hold unfavorable views of the ACA. To view partisan attitudes over time, check out our ACA interactive.

Similar to the views of the 2010 Affordable Care Act, the most recent KFF Health Tracking Poll finds the public’s support for a national health plan, or Medicare-for-all, is also basically holding steady since the 2016 presidential election, when Democratic candidate Sen. Sanders made it a hallmark of his campaign, with 56 percent of the public favoring such a proposal. See more at our KFF tracker.

This month’s tracking poll also examined whether the public’s reaction to a variety of terms used to describe the idea of expanding health insurance coverage to all Americans had changed in light of increased national attention to such proposals. The results are very similar to the November 2017 KFF Health Tracking Poll with “universal health coverage” (63 percent), “Medicare-for-all” (63 percent), and “national health plan” (59 percent) garnering the most positive reactions. Fewer report a positive association to “single payer health insurance system” (49 percent) or “socialized medicine” (46 percent).

There is some evidence that views of “Medicare-for-all” are becoming increasingly partisan. For example, there has been an uptick in the share of Democrats who say they have a “very positive” reaction to “Medicare-for-all,” up from 49 percent in 2017 to 58 percent in the most recent tracking poll. There has also been a slight uptick among Republicans who have a “very negative” reaction to the term, from 42 percent in 2017 to 51 percent in 2019.

Partisan Views Of Their Party’s Health Care Agenda

This month’s tracking poll also examines partisans’ view of some congressional actions on health care and finds that both Republicans and Democrats are generally supportive of their party’s platforms.

The Graham-Cassidy proposal, first introduced by the Republican lawmakers during ACA repeal efforts in 2017, replaces funding for the ACA’s Medicaid expansion and individual insurance market subsidies with a block grant program. The proposal caps funding but also allows more state flexibility in how to spend the funding such as deciding who to cover and what protections should be in place for consumers. Overall, six in ten Republicans and Republican-leaning independents support such a proposal while about three in ten (31 percent) oppose.

On the other side of the aisle, this month’s tracking poll finds Democrats and Democratic-leaning independents similarly supporting their party’s leaders on health care. About half say they want Democrats in Congress to focus their efforts on improving and protecting the ACA (52 percent) while a smaller share, but still four in ten (39 percent), say they want Democrats in Congress to focus on passing a national Medicare-for-all plan. This is a slight shift from last month, but could be due to the increased media coverage of the Trump administration’s threats to the ACA during the past few weeks.

Pre-Existing Condition Protections

On December 14, 2018, a federal district court judge in Texas issued a ruling challenging the future of the 2010 Affordable Care Act (ACA).The judge sided with Republican state attorneys general and ruled that, since the 2017 tax bill passed by Congress zeroed out the penalty for not having health insurance, the ACA is invalid. Last month, the Trump administration filed a brief stating that the administration supports the federal judge’s ruling that all of the ACA is invalid. Previously, the Trump administration had stated as part of the lawsuit known as Texas v. United States, it will no longer defend the ACA’s protections for people with pre-existing medical conditions.

The two most high-profile ACA protections for people with pre-existing conditions are that the law prohibits insurance companies from denying coverage based on a person’s medical history (known as guaranteed issue), and the law prohibits insurance companies from charging those with pre-existing conditions more for coverage (known as community rating). The majority of the public say it is “very important” to them that these two ACA provisions protecting those with pre-existing conditions remain law even after hearing that these protections may have led to increased insurance costs for some healthy people. This includes majorities of all partisans saying it is “very important” that these protections remain law as well among those who live in a household without a pre-existing medical condition – the population that may be paying more for coverage.

Overall, seven in ten say it is “very important” to them that the provision that prohibits health insurance companies from denying coverage because of a person’s medical history remains law. An additional one-fifth (19 percent) say it is “somewhat important” this provision remains law. Similarly, about two-thirds (64 percent) say it is “very important” that the provision that prohibits health insurance companies from charging sick people more remains law, while an additional one in five (22 percent) say it is “somewhat important.”

This month marks a slight uptick among the share of Republicans who say it is “very important” to them that these provisions remain law even if this means some healthy people may pay more for coverage. The share of Republicans who say it is “very important” to them that guaranteed issue remains law is up seven percentage points, from 47 percent last year to 54 percent. Similarly, the share of Republicans who say it is “very important” that the prohibiting of community rating remains law is up 10 percentage points, from 41 percent to 51 percent.

A larger share of the public say they do not want to see the Supreme Court overturn the ACA’s pre-existing condition protections (68 percent) than say they do not want the Supreme Court to overturn the entire 2010 health care law (54 percent), but still a majority say they do not want this to happen. While a majority of Republicans want the Supreme Court to overturn the ACA, less than half (44 percent) say they want to see the ACA’s protections for people with pre-existing conditions overturned.

A majority of the public say they are worried (either “very worried” or “somewhat worried”) that they or someone in their family will lose coverage or will not be able to afford coverage in the future if the Supreme Court eventually hears the case and overturns either the entire health care law or the ACA’s protections for people with pre-existing conditions. Nearly half (46 percent) are “very worried” they won’t be able to afford coverage if the ACA is overturned or if the pre-existing condition protections are overturned (44 percent). Slightly fewer – but still about four in ten – are “very worried” they would lose coverage if either the ACA or the protections for people with pre-existing condition protections are overturned by the Supreme Court (39 percent, both).

Individuals in households with a pre-existing condition are more likely than their counterparts to say they are worried about affording coverage or losing coverage if either the entire ACA or the protections for people with pre-existing conditions are overturned. Across all measures, about six in ten of those living in households with a pre-existing condition say they are worried about their coverage compared to about half of those living in households without a pre-existing condition.

While the Texas v. United States lawsuit is still making its way through the U.S. court system, the Trump administration has passed new rules promoting the sale of short-term health insurance policies, which generally have lower premiums compared to ACA-compliant plans but are not required to cover the same benefits or people with pre-existing conditions. While it is still unclear how many people purchased short-term plans during this year’s open-enrollment period, KFF polling finds that the majority of the public wants the federal government to require insurance companies to include a certain set of benefits as well as coverage for pre-existing conditions.

Majorities, across party identification, think the federal government should require health insurance companies to cover a certain set of benefits and cover pre-existing conditions (67 percent) rather than allow them to sell short-term plans that cost significantly less but provide fewer benefits and do not cover some pre-existing conditions (26 percent). Majorities of Democrats (83 percent), independents (62 percent), and Republicans (53 percent) think the federal government should require health insurance plans to cover a certain set of benefits and cover pre-existing conditions.

Surprise Medical Bills

While many health care issues have policymakers divided, both President Trump and Congress have recently announced plans to tackle “surprise medical bills.” The term, “surprise medical bills,” describes charges from when an insured individual inadvertently receives care from an out-of-network provider.¹  Last summer, KFF polling found that two-thirds of Americans said they were either “very worried” or “somewhat worried” about being able to afford their or a family member’s unexpected medical bill. This month’s KFF Health Tracking Poll, perhaps unsurprisingly, finds broad support across partisans for the federal government taking actions to protect patients from having to pay the cost incurred from an inadvertent out-of-network provider. At least three-fourths of the public say the federal government should take action to protect patients from covering the cost of care when the experience the following:

• they are taken to an emergency room by an out-of-network ambulance (78 percent),
• they are taken to an out-of-network emergency room during a medical emergency (78 percent), or
• they are at an in-network hospital but treated by an out-of-network doctor or specialist (76 percent).

Majorities of Democrats, independents, and Republicans say the federal government should take action to protect patients from paying the cost of care in each of these instances. A larger share of Democrats and independents than Republicans say the federal government should take action to protect patients from each of the examples provided, but still a majority of Republicans say the federal government should take action.

If the government takes actions to protect patients from having to pay for the cost of their care, there is not a consensus on whether insurers, or providers, or both, should cover the cost. Few say the doctor or provider should solely be responsible for the cost of the care but the public are divided in whether the insurance company, alone, should cover the cost or if the insurance company and the doctor or provider should share in covering the cost. About half say both the provider and the insurance company should cover the cost of care (47 percent) while a similar share say the insurance company, alone, should cover the cost of care (43 percent).

Four in ten (41 percent) insured adults ages 18-64 say there has been a time in the past two years when they or a family member received care from a doctor, hospital, or lab that they thought was covered and their health plan didn’t cover the bill at all or covered less than they expected. For many of these families (one in five insured adults ages 18-64), this surprise bill was related to care received from an out-of-network provider.² 

Health Care in President Trump’s Budget Proposal

In March 2019, the Trump administration released their latest budget proposal, which included cuts to both Medicare and Medicaid as well as stated support for legislation known as the “Graham-Cassidy proposal.”

This month’s tracking poll finds few Americans wanting to see Congress “decrease spending” on either Medicare (7 percent) or Medicaid (12 percent), with at least four in ten saying they want to see Congress “increase spending” on each of these (47 percent and 42 percent, respectively).

There are strong partisan differences with a majority of Democrats wanting Congress to “increase spending” on Medicare and Medicaid (65 percent and 61 percent, respectively), while most Republicans want to see spending levels “stay about the same” (58 percent and 52 percent, respectively). Independents are divided between wanting Congress to “increase spending” and “keep spending about the same.”

This KFF Health Tracking Poll was designed and analyzed by public opinion researchers at the Kaiser Family Foundation (KFF). The survey was conducted April 11th–16th 2019, among a nationally representative random digit dial telephone sample of 1,203 adults ages 18 and older, living in the United States, including Alaska and Hawaii (note: persons without a telephone could not be included in the random selection process). The sample included 290 respondents reached by calling back respondents that had previously completed an interview on the KFF Tracking poll more than nine months ago. Computer-assisted telephone interviews conducted by landline (301) and cell phone (902, including 624 who had no landline telephone) were carried out in English and Spanish by SSRS of Glen Mills, PA. To efficiently obtain a sample of lower-income and non-White respondents, the sample also included an oversample of prepaid (pay-as-you-go) telephone numbers (25% of the cell phone sample consisted of prepaid numbers) as well as a subsample of respondents who had previously completed Spanish language interviews on the SSRS Omnibus poll (n=10). Both the random digit dial landline and cell phone samples were provided by Marketing Systems Group (MSG). For the landline sample, respondents were selected by asking for the youngest adult male or female currently at home based on a random rotation. If no one of that gender was available, interviewers asked to speak with the youngest adult of the opposite gender. For the cell phone sample, interviews were conducted with the adult who answered the phone. KFF paid for all costs associated with the survey.

The combined landline and cell phone sample was weighted to balance the sample demographics to match estimates for the national population using data from the Census Bureau’s 2017 American Community Survey (ACS) on sex, age, education, race, Hispanic origin, and region along with data from the 2010 Census on population density. The sample was also weighted to match current patterns of telephone use using data from the January-June 2018 National Health Interview Survey. The weight takes into account the fact that respondents with both a landline and cell phone have a higher probability of selection in the combined sample and also adjusts for the household size for the landline sample, and design modifications, namely, the oversampling of prepaid cell phones and likelihood of non-response for the re-contacted sample. All statistical tests of significance account for the effect of weighting.

The margin of sampling error including the design effect for the full sample is plus or minus 3 percentage points. Numbers of respondents and margins of sampling error for key subgroups are shown in the table below. For results based on other subgroups, the margin of sampling error may be higher. Sample sizes and margins of sampling error for other subgroups are available by request. Note that sampling error is only one of many potential sources of error in this or any other public opinion poll. Kaiser Family Foundation public opinion and survey research is a charter member of the Transparency Initiative of the American Association for Public Opinion Research.

1. K. Pollitz (2016). Surprise Medical Bills. Kaiser Family Foundation. Available at https://modern.kff.org/private-insurance/issue-brief/surprise-medical-bills/ ↩︎
2. The August 2018 KFF Health Tracking Poll found that one in ten insured individuals between the ages of 18 and 64 reported having a surprise out-of-network bill. The April 2019 KFF Health Tracking Poll provides a household measure. ↩︎

Health Care for the Homeless (HCH) programs, a subset of community health centers that receive special populations funding to address the specific needs of vulnerable and medically complex patients, play a significant role in addressing the opioid epidemic by providing medication-assisted treatment (MAT). MAT, which combines one of three medications (methadone, buprenorphine, or naltrexone) with behavioral therapies, is the standard of care for opioid use disorder (OUD). This brief presents findings from an analysis of health center data on the provision of buprenorphine-based MAT, as well as interviews with providers and administrators from 12 HCH programs about strategies they adopted to implement MAT programs. Key findings include:

• Among health centers, HCH programs provide a disproportionately large share of buprenorphine-based MAT, although there was wide variation across states. HCH programs accounted for over one-third of both providers who can prescribe buprenorphine and of all patients receiving buprenorphine in 2017, despite serving only 4% of all health center patients. Additionally, the number of providers able to prescribe buprenorphine and the number of patients receiving the medications both more than doubled at HCH programs from 2016 to 2017.
• Building support with leadership and clinical staff was a key strategy to implementing MAT at HCH programs. Some approaches to achieving this goal included identifying “champions” within HCH programs to advocate for establishing MAT services, consulting with more experienced HCH programs, and addressing concerns about medication diversion.
• HCH programs also reported the need to invest in staff training and support. Providing training to primary care providers who lacked expertise in treating opioid use disorder (OUD), fostering coordination between primary care and behavioral health staff, dedicating administrative staff for MAT programs, and recruiting waivered providers can help build MAT programs.
• Another important strategy respondents discussed was the need to create more flexible systems and programs. For example, adjusting schedules to block out dedicated time for MAT patients and adopting a more flexible approach to the therapy component of MAT services improved access to treatment.
• Fostering community partnerships and accessing available resources helped build MAT programs. HCH programs were able to establish and grow MAT programs by working with community partners, such as local hospitals and social services organizations, and by maximizing available federal, state, and local grant funding for training and treatment. HCH programs also reported educating local homeless service providers on the importance of MAT to recovery to ensure patients could access shelter or housing while they were in treatment.

Looking ahead, HCH programs will likely continue to make more investments in provider training and capacity, find additional strategies to grow programs to meet patient need, and ensure that MAT services are provided as part of the standard of care for OUD.

Introduction

As providers of comprehensive health care services in medically underserved areas, community health centers play an important role in addressing the opioid epidemic.¹  Health Care for the Homeless (HCH) programs are community health centers that serve people experiencing homelessness, who are often disproportionately impacted by SUD, including OUD. Funded through the Health Resources and Services Administration (HRSA), HCH programs receive special populations funding that allows for more intensive services to meet the specific needs of very vulnerable and medically complex patients.²  Of note, HCH grantees are required to provide or arrange for SUD treatment services, and they typically provide more case management, outreach, and other support services than non-HCH health centers.³  In some cases, HCH programs are part of larger health centers, while in other cases they are stand-alone organizations. In 2017, there were 1,373 health centers that served nearly 1.4 million patients experiencing homelessness; 74% (just over 1 million) of these patients were served by 299 HCH programs.⁴ 

The standard of care for OUD is medication-assisted treatment (MAT), which combines one of three medications (methadone, buprenorphine, or naltrexone) with behavioral therapies, and is associated with better outcomes than behavioral therapies alone.⁵  In order to prescribe buprenorphine to treat OUD, an eligible provider must obtain a waiver from the Substance Abuse and Mental Health Services Administration (SAMHSA).⁶  Compared to other health centers, HCH grantees are well-positioned to offer MAT services because of a more intensive care model that has long-emphasized integrated behavioral health and primary care coupled with a low-barrier, harm-reduction approach to patient engagement.

This brief describes the provision of buprenorphine (also known by trade names Suboxone®, Zubsolv®, and Subutex®, among others) at HCH programs relative to other health centers, the growth of these services between 2016 and 2017, and the availability of buprenorphine at HCH programs in states hard-hit by the opioid epidemic. It also highlights successful strategies that HCH programs have used to implement buprenorphine-based MAT programs. Findings are based on an analysis of annual data from the Uniform Data System (UDS) on health center patients and services,⁷  and on interviews with providers and administrators from 12 HCH programs conducted by the National Health Care for the Homeless Council and the Kaiser Family Foundation. These data and strategies can help inform where MAT might be further expanded, and guide efforts to implement MAT programs at other health center programs and more broadly. In this paper, the term “MAT” refers to buprenorphine-based MAT specifically.

Providing Buprenorphine at HCH Programs

HCH programs provide a greater share of buprenorphine treatment compared to their overall patient numbers. In 2017, HCH programs nationally reported having 1,100 providers with a waiver to prescribe buprenorphine, and delivered buprenorphine to 24,400 patients (Figure 1). While HCH programs account for only 4% of all patients served at health centers nationally, over one-third (37%) of buprenorphine-waivered providers and 38% of all patients receiving buprenorphine were affiliated with HCH programs.

Greater patient need as well as a more intensive treatment model that includes SUD services may help to explain why HCH programs are providing a greater share of buprenorphine-based MAT services. These programs serve a patient population that disproportionately struggles with SUDs, to include OUD. Because of the unique needs of their patients, HCH programs are required to offer SUD treatment services, though not buprenorphine-based MAT specifically, as part of their special populations grant. As a result, many of these clinical settings have developed treatment models that integrate primary care and behavioral health services, provide intensive supports, and emphasize lower-barrier approaches to accessing care. This care model strongly positions these programs to provide buprenorphine services specifically, as well as more comprehensive SUD treatment generally.

As with health centers nationally, both the number of buprenorphine-waivered providers as well as the number of patients getting treatment at HCH programs increased significantly between 2016 and 2017. The number of providers increased 82% across HCH programs, from 606 to 1,100, while the number of patients increased 65%, from 14,749 to 24,400 (Figure 2). These increases demonstrate how HCH programs have used resources to respond to the growing demand for treatment as the opioid epidemic has escalated.

While the national data paint a broad picture, the provision of buprenorphine by HCH programs varied widely across states. Not all states (or all HCH programs within a state) are facing the same challenges from the opioid epidemic, and not all HCH programs are expected to be delivering the same level of OUD services. Consequently, while HCH programs in 19 states served fewer than 100 patients in 2017, HCH programs in other states had many providers who could prescribe buprenorphine, were prescribing buprenorphine to large numbers of patients, and had significant year-over-year increases in both MAT providers and patients receiving buprenorphine (Table 1). Between 2016 and 2017, HCH programs in 24 states saw at least a doubling of the number of staff able to prescribe buprenorphine and in 20 states provided buprenorphine-based MAT to at least twice as many patients. Policy changes that now allow nurse practitioners and physician assistants to prescribe buprenorphine may account for some of the increase, as well as numerous funding opportunities to train additional providers and increase capacity for care. HCH programs in several states saw decreases in the number of waivered providers or patients served; however, this decline may result from staff turnover rather than a decreased commitment to providing MAT, or it may reflect a greater availability of treatment options for patients in their communities.

Importantly, in states hardest hit by the opioid epidemic, particularly in New England, the Mid-Atlantic, and parts of the Midwest,⁸  many HCH programs have active buprenorphine programs. In 15 of the 23 states with the highest opioid-related overdose death rate, at least half of HCH programs are providing buprenorphine, and in nine states, at least two-thirds of all of the HCH programs are providing MAT (Table 2). However, some states continue to have low buprenorphine-based MAT provision among HCH programs, particularly in Kentucky and Tennessee, even though there may be a significant need for these services in their communities. (The data for this report do not indicate why MAT service levels are low in these areas.) Providing buprenorphine-based MAT remains only a small part of the services most HCH programs deliver, but some HCH programs have made a greater commitment to providing MAT than others. HCH programs in three states (CT, RI, and VT) are providing buprenorphine to more than 15% of their patients, and MAT programs in an additional six states (MA, MD, NC, NH, NM, and WV) are serving 5% or more of their total patients. Because health centers tailor their services based on local need, these data highlight where HCH programs are currently providing extensive buprenorphine-based MAT in alignment with community need and where further expansions may be considered. Conversely, in states where OUD may not be the most significant issue, HCH programs may not be prioritizing the development of active buprenorphine programs.

Strategies for Successfully Providing Buprenorphine-based MAT at HCH Programs

HCH programs use a number of wide-ranging strategies to overcome common challenges to providing buprenorphine-based MAT services to their patients. These strategies address the need to build support among leadership and clinical staff, provide training and assistance to clinical and non-clinical staff, modify existing systems and adopt flexible programs to enhance capacity and access, and maximize community partnerships resources. The following discussion highlights themes from interviews with CEOs, program administrators, physicians, and behavioral health staff at 12 HCH programs.

Organizational SUPPORT and buy In

Identifying champions within HCH programs who will advocate for establishing MAT programs is essential to building the necessary support from leadership and clinical staff. Initiating MAT services can be difficult when board members, CEOs or other executive leaders, and/or providers do not feel that SUD is an issue that health centers should be prioritizing. This challenge can be particularly acute when leadership or clinical staff refuses to recognize MAT as an evidence-based practice and a standard of care, preferring instead a more traditional abstinence-focused model. To overcome these attitudes and build support within their organizations, respondents reported identifying “champions” within their agencies who were passionate about addressing OUD and were willing to advocate for the benefits of establishing a MAT program. These champions worked to help leadership recognize MAT as a valuable service consistent with the HCH program’s mission. Recruiting champions who can speak to the concerns from both primary care and behavioral health staff can facilitate coordination across the two disciplines.

Consulting with more experienced HCH programs to share lessons learned and address concerns can reduce barriers to establishing a MAT program. Several programs were able to engage in peer-to-peer technical assistance efforts, to include visiting clinical sites with established MAT programs to talk directly with providers, patients, and leadership. These visits provided insights into how programs were initiated, how they expanded over time, and how they currently operate. They were also able to share lessons learned and strategize approaches to overcome specific challenges. Respondents who had participated in these visits noted that staff returned from the visits energized and committed to starting a program.

Acknowledging and addressing concerns about medication diversion may be necessary to gaining provider support for a MAT program. A number of clinicians expressed concern about repercussions to their medical license if patients divert the medications they are prescribed. At the same time, providers also acknowledged that many patients have successfully self-medicated with buprenorphine purchased on the street, and that accessing traditional treatment programs is often difficult for very vulnerable people struggling with stability. They conceded the use of diverted medications is a harm reduction approach that reduces overdose risk and facilitates a treatment pathway when patients are ready to make a stronger commitment to a more formal addiction program. The conflict between concern over diversion and interest in harm reduction and overdose prevention creates a dynamic that some providers said they struggle to address. Several providers noted the importance of addressing diversion directly with their patients when they suspect or become aware of it happening. Although potentially difficult and tense, these conversations are necessary to reaffirm patients’ commitment to treatment and to ensure the integrity of the MAT program.

Staff Training and Support

Providing training and support to primary care providers who lack expertise in treating OUD can increase their willingness to provide MAT services. Some primary care providers expressed a genuine interest in providing MAT, but acknowledged that they did not have the clinical training, skills, or core competencies to confidently screen and treat patients with OUD. As primary care providers, they also recognized that they were ill-equipped to confidently navigate relapse episodes, and some had difficulty finding harm reduction strategies that would continue engaging vulnerable patients in care. In response, respondents from successful MAT programs reported conducting regular trainings on addiction, harm reduction, motivational interviewing, and other evidence-based approaches to build effective skills for engaging patients in treatment. Some also noted having success in pairing new providers with more experienced ones to allow for mentoring. Another approach for programs was to start small with only a few patients, and expand patient caseloads as provider skills and comfort levels increased.

Engaging staff throughout the organization and fostering coordination between primary care and behavioral health staff helps broaden staff support for the program and can improve quality of care for patients. Respondents reported collaborating with a broad range of team members to develop standards of care and program policies that would meet the needs of a vulnerable patient population. They worked to include community health workers, peer specialists, and outreach workers in training opportunities and used these positions to help locate and re‑engage patients who had become disconnected from care. In addition, some program staff reported holding regular case conferences with team members from primary care and behavioral health to address both client-specific issues and program-wide concerns. In addition to addressing specific cases, these meetings served to build stronger working relationships across the two disciplines. Some respondents also reported their programs allow all staff members, including nurses, case managers, and social workers, to refer patients to their MAT programs in order to maximize access to MAT services and increase staff investment in the success of the program.

Dedicating administrative staff for MAT programs can alleviate burdens on clinicians and allow more time for patient care. In addition to training requirements for provider prescribing, federal law also requires providers to keep patient logs and track other administrative data, which can be time-consuming. In response, some HCH programs identified dedicated staff to coordinate the MAT programs, reserve patient visits in provider schedules, and keep track of MAT documentation requirements. Another challenge voiced by many respondents is the requirement from many Medicaid managed care organizations and other insurers to obtain prior authorization before initiating MAT. Respondents noted this process is staff-intensive and creates delays of several days or more before treatment can be started, reducing the window of opportunity to engage a patient in treatment. Having a staff person dedicated to completing prior authorization requests can facilitate obtaining the authorizations in as timely a manner as possible. Respondents also reported working with insurance plans (or the state) to waive prior authorization requirements for those diagnosed with OUD.

Setting expectations for participation in MAT programs by current and new staff and recruiting already-waivered providers can help advance acceptance of MAT. Several respondents mentioned that they had encountered other providers who simply did not prefer to work with patients who had SUD, desiring a more traditional primary care scope of practice. While this was often attributed to long-time providers who believed they would be overwhelmed by unmanageable patients, this viewpoint could inhibit MAT services. In turn, clinical leaders said that they now look to hire new providers who already have their waiver, and they set the expectation that MAT participation is part of the model of care provided.

program Flexibility

Modifying internal systems to meet the unique demands of MAT programs can increase provider capacity and facilitate patient adherence with treatment. Clinicians at some HCH programs noted that it was difficult to find room in their busy schedules to accommodate frequent visits often needed by MAT patients to refill or adjust their prescription or to “check-in” on their current status with treatment. Many said that their appointment calendar is booked out weeks in advance, leaving little opportunity to add new patients who likely needed more time and attention than they had available. In response, successful HCH programs adjusted schedules to block out dedicated time for MAT patients and made other changes to eliminate barriers to treatment. For example, some HCH programs reserved same-day, walk-in appointments for MAT patients, scheduled evening services to accommodate those who could not access treatment during the day, and created a central call number where patients could get more information. As mentioned above, other staff roles have been used to help support patients, which allows providers more time to focus on clinical care.

Adopting a more flexible approach to the therapy component of MAT services based on patient needs can improve access to treatment. Patients struggling with homelessness and addiction (as well as other issues) may not be able to navigate more structured programs, complete assessments, wait for insurance approvals, or have the time or transportation to attend frequent therapy sessions or visits for prescription refills. As a result of complex patient needs (to include unstable housing), they say engagement in treatment can vary widely with some individuals starting and stopping treatment suddenly, which can be difficult for program continuity and improving patient health outcomes. Some respondents were concerned that patients needed more therapy support in their recovery than they were able to provide, while others stressed the importance of lowering barriers to care by starting treatment immediately rather than requiring a program orientation, extensive assessments, or rigid adherence to an intensive therapy component. These divergent viewpoints illustrate that providers continue to evaluate how best to deliver care to a high-need population requiring intense services.

Community partnerships and RESOURCES

Working with community providers and organizations can facilitate access to and reduce barriers to treatment for patients. These partnerships involved local hospitals and other medical providers, as well as housing and social service organizations. To initiate treatment, some HCH programs developed agreements with local hospitals or emergency departments providing the first dose of buprenorphine when patients presented for treatment and then referring them to an HCH program for ongoing care, while others formed partnerships with other community providers, such as the community mental health center, to maximize treatment resources for patients. Some respondents noted that homeless services providers (shelters, housing programs, etc.) may prohibit clients who take medications for OUD, which forces patients to choose between treatment and shelter. These restrictions, in turn, reduce the effectiveness of treatment and the willingness of some providers to invest in developing MAT programs that they feel may have limited impact. In an effort to reduce this barrier, some HCH programs reported working to create a greater understanding of MAT with local homeless service providers to ensure that patients could access shelter or housing while they were in treatment.

Maximizing available funding and training resources can help initiate and expand MAT programs. Numerous grant opportunities have been made available from both the Health Resources and Services Administration (HRSA) and the Substance Abuse and Mental Health Services Administration (SAMHSA) to train providers, increase clinical skills, and expand capacity for treatment. Respondents also pointed to grants and other training opportunities from state/local health departments, professional organizations, Project ECHO [an online, peer-to-peer training model], and other sources. With competing priorities and limited funds, particularly for HCH programs in states that have not expanded Medicaid, taking advantage of these federal and other resources can be critical to starting a program and refining it to match patient needs and provider capacity.

Looking Ahead

As the opioid epidemic continues to escalate, HCH programs will remain on the front lines of providing buprenorphine-based MAT to very vulnerable, high-need patients disproportionately impacted by this crisis. While some HCH programs have not yet begun programs or scaled them to meet community need, many HCH programs are providing significant levels of buprenorphine-based MAT and are rapidly growing the number of patients they are able to serve. These programs have overcome common challenges by adopting strategies that focus on increasing organizational support, facilitating staff training and collaboration, modifying the MAT program to ensure better access, and maximizing community partnerships and available resources. These strategies can be adopted by HCH programs and other health centers, and by other community providers looking for effective ways to expand access to treatment for the millions of people struggling with OUD.

1. Julia Zur, Jennifer Tolbert, Jessica Sharac, and Anne Markus, “The Role of Community Health Centers in Addressing the Opioid Epidemic,” Kaiser Family Foundation, accessed February 2019, https://modern.kff.org/medicaid/issue-brief/the-role-of-community-health-centers-in-addressing-the-opioid-epidemic/. ↩︎
2. “Health Centers,” Title 42 U.S. Code, Sec 254b Available: http://uscode.house.gov/view.xhtml?req=granuleid:USC-prelim-title42-section254b&num=0&edition=prelim; Accessed: 2/5/19. ↩︎
3. Ibid ↩︎
4. Health Resources and Services Administration, “2017 Health Center Data,” accessed February, 2019, https://bphc.hrsa.gov/uds/datacenter.aspx?q=tall&year=2017&state=. ↩︎
5. Substance Abuse and Mental Health Services Administration, “Medication Assisted Treatment,” accessed January 29, 2019, https://www.samhsa.gov/medication-assisted-treatment. ↩︎
6. Substance Abuse and Mental Health Services Administration, “Buprenorphine Waiver Management,” accessed January 29, 2019, https://www.samhsa.gov/programs-campaigns/medication-assisted-treatment/training-materials-resources/buprenorphine-waiver. ↩︎
7. Health Resources & Services Administration. “Uniform Data System (UDS) Resources,” accessed February 2019, https://bphc.hrsa.gov/datareporting/reporting/index.html. ↩︎
8. Kaiser Family Foundation “Opioid Overdose Death Rates and All Overdose Death Rates per 100,000 Population (Age-Adjusted), accessed February 2019, https://modern.kff.org/other/state-indicator/opioid-overdose-death-rates/. ↩︎

Unlike nearly all other Medicaid-covered services, states use optional waivers¹  to provide most home and community-based services (HCBS). Seniors, people with disabilities, and those with chronic conditions rely on Medicaid HCBS to live independently outside of nursing homes and other institutions. HCBS waivers enable states to expand Medicaid financial eligibility and offer benefits targeted to a particular population; these waivers also allow states to choose – and limit – how many people are served. States’ ability to cap HCBS waiver enrollment can result in waiting lists when the number of people seeking services exceeds the number of waiver slots available.

Latest @KaiserFamFound survey of home- and community-based service waiver programs finds more than 700K people were on waiting lists nationally in 2017

This issue brief presents the latest data and answers key questions about HCBS waiver waiting lists from the Kaiser Family Foundation’s 17th annual survey of state Medicaid HCBS programs. Appendix Tables contain state-level data. Related briefs present state-level HCBS enrollment and spending data and highlight themes in state HCBS policies.

Key findings about Medicaid HCBS waiver waiting lists include:

• Over 707,000 people are on HCBS waiver waiting lists in 40 states as of 2017, an increase of eight percent over 2016. People with intellectual and developmental disabilities (I/DD) comprise about two-thirds of total waiver waiting list enrollment, while over one-quarter are seniors and adults with physical disabilities.
• The data do not support the conclusion that there is a relationship between a state’s ACA Medicaid expansion status and changes in its HCBS waiver waiting list. From 2013 to 2017, a higher share of non-expansion states (69%, 13 of 19) had an increase in waiver waiting list enrollment, compared to the share of expansion states (41%, 13 of 32).
• Waiting list data alone are an incomplete measure of state capacity and demand for HCBS and are not directly comparable across states. The populations served and how they are defined vary among states, and everyone on waiting lists may not be eligible for services.

Medicaid fills an important gap as the sole source of coverage for most HCBS. While waiver waiting lists suggest some degree of unmet need for HCBS, this reflects and is more accurately attributed to gaps in the U.S. health care system as a whole, not shortcomings of Medicaid alone.

1.  Who are the people on HCBS waiver waiting lists?

Over 707,000 people are on HCBS waiver waiting lists nationally in 2017,²  an increase of eight percent over 2016 (Figure 1 and Appendix Table 1).³  This increase is consistent with the average annual percent change in waiver waiting list enrollment over the last 15 years, which was nine percent. Total national waiver waiting list enrollment has increased each year since 2010.

More than three-quarters of states (40 out of 51) report an HCBS waiver waiting list for at least one target population in 2017 (Appendix Table 1).⁴  Every state offers at least one HCBS waiver targeted to one or more populations.⁵  The total number of waivers varies by state, depending on the number of populations targeted and/or the waiver authority used.⁶  Nationally, there are a total of 287 HCBS waivers, including those under Section 1915 (c) and those under Section 1115, across all 50 states and DC, in 2017.⁷ 

Although some people joined waiver waiting lists between 2016 and 2017, others left a waiting list and began receiving waiver services during this period. For example, 67,000 people moved off waiting lists and began receiving services in 2017, in the 27 states that could report such data.⁸  Waiver waiting lists are dynamic, with some people joining a list to seek services, while others leave the list and begin receiving services. People may move off a waiting list and begin receiving services when a state increases waiver capacity by funding new slots or when an existing waiver enrollee stops receiving services due to a change in income, functional need, age, state residency, or another reason relevant to waiver eligibility.

People with I/DD comprise about two-thirds (67%, about 473,000 in 36 states)⁹  of total waiver waiting list enrollment (Figure 2 and Appendix Table 1). Seniors and adults with physical disabilities account for over one-quarter (28%, about 201,000 in 20 states)¹⁰  of total waiting list enrollment. The remaining five percent of waiver waiting list enrollment is spread among other populations, including children who are medically fragile or technology dependent (about 29,000 in six states),¹¹  people with traumatic brain or spinal cord injuries (TBI/SCI, about 3,400 in eight states),¹² ) people with mental illness (about 1,400 in three states),¹³  and people with HIV/AIDS (about 80 in 1 state.)¹⁴ 

The waiting period for waiver services averaged 30 months across all waivers with waiting lists in 2017, with substantial variation by target population (Appendix Table 2).¹⁵  The average waiting period by population ranged from four months for waivers targeting people with HIV/AIDS to 66 months for waivers targeting people with I/DD.

Almost all (39 of 40) states with waiting lists prioritize individuals with certain characteristics to receive services when slots become available.¹⁶  For example, 23 states offer waivers that give priority to individuals who meet specific crisis or emergency criteria, 22 states prioritize people who are moving from an institution to the community, and 19 states prioritize people who are at risk of entering an institution without waiver services (no data shown). Fewer states prioritize individuals based on assessed level of need (9) or age (6). Twenty-two states use more than one priority group.¹⁷ 

2.  Is there a relationship between HCBS waiver waiting lists and state choices about the ACA Medicaid expansion?

The data do not support the conclusion that there is a relationship between a state’s ACA Medicaid expansion status and changes in its HCBS waiver waiting list. Over the period just prior to ACA expansion through the first four years of expansion coverage (2013 to 2017), a higher share of non-expansion states (69%, 13 of 19) had an increase in HCBS waiver waiting list enrollment, compared to the share of expansion states (41%, 13 of 32) (Figure 3 and Appendix Table 3).¹⁸ 

Medicaid HCBS waiver waiting lists pre-date the ACA’s Medicaid expansion, which became effective in most states in 2014. As explained above, waiver waiting lists result from the fact that federal Medicaid law allows states to limit and cap waiver enrollment. This program feature has existed since HCBS waiver authority was created in the early 1980s.¹⁹  States have reported waiver waiting lists in each year of our HCBS waiver policy survey, dating back to 2002. The increase in the number of people receiving Medicaid HCBS, and the number of people in need of those services, over the years is attributable to a number of factors, including the aging of the population; medical and technological advances that prolong the lifespan, provide previously unavailable treatments for certain conditions, and offer new options to support independent community living; changing individual and societal preferences for HCBS in lieu of institutional care; and state efforts to meet their community integration obligations under the Americans with Disabilities Act (ADA) and the Olmstead decision.²⁰ 

The ACA Medicaid expansion includes – and provides a new coverage pathway for – some people with disabilities and chronic conditions who were previously ineligible. While people who receive Supplemental Security Income (SSI) benefits and those dually eligible for Medicare and Medicaid are excluded from the ACA Medicaid expansion group, many expansion adults nevertheless have disabilities and/or chronic health conditions.²¹  The ACA Medicaid expansion has enabled some people who were not previously eligible for coverage, and otherwise would be uninsured, to gain coverage.²²  Some of these people have conditions that may not rise to the stringent level required to establish SSI eligibility, yet still have an ongoing need for health care services. Others may qualify for Social Security Disability Insurance (SSDI) benefits but, without the Medicaid expansion pathway, could be uninsured during the required 24-month waiting period before Medicare eligibility. Medicaid expansion coverage can include access to needed HCBS, such as home health or personal care state plan services; to the extent that those services meet the needs of expansion adults with disabilities or chronic conditions, these adults may choose not to pursue HCBS waiver coverage – and not join a waiver waiting list – because state plan coverage is available to them.²³ 

3.  Why is waiver waiting list data not directly comparable among states?

Waiting lists are a function of the populations a state chooses to serve and how the state defines those populations; both of these factors vary among states, making waiting lists an incomplete measure of state capacity and demand for HCBS and not directly comparable among states. While all states have waivers serving people with I/DD, seniors, and adults with physical disabilities, fewer states offer waiver services for other target populations. Consequently, there may be a particular population in need of services, but the state does not keep a waiting list because it does not offer a waiver for that population. In addition, all states do not define the eligibility criteria for their waiver target populations in the same way.²⁴  Furthermore, all individuals on waiting lists ultimately may not be eligible for waiver services. For example, 31 states with waiting lists screen individuals for waiver eligibility before they are placed or while they are on a waiting list, while nine states do not. The nine states that do not screen for waiver eligibility comprise 57% (402,000) of the total waiting list population.²⁵ 

All states with waiting lists provide non-waiver Medicaid services (i.e., state plan services) to people who are waiting for waiver services. Medicaid state plan services can include some HCBS, such as home health and personal care. Nearly all (93%) of people on waiver waiting lists currently live in the community.²⁶ 

Looking Ahead

As the primary payer for long-term services and supports, and the only source of many HCBS that are vital to seniors and people with disabilities and chronic conditions, Medicaid fills an important gap in the spectrum of health care coverage options available today.²⁷  Medicare covers only a limited amount of skilled post-acute care; private insurance typically does not cover HCBS, especially to the extent needed by people who rely on those services to meet daily needs over time; and out-of-pocket costs can be financially prohibitive. Medicaid also plays an essential role by offering federal financing to help states meet their ADA community integration obligations. Until other sources of long-term care coverage become more widely available and affordable, states, providers, and people who need HCBS will continue to rely on Medicaid to provide these necessary services. While waiver waiting lists suggest a degree of unmet need for HCBS, this reflects and is more accurately attributed to gaps in the U.S. health care system as a whole rather than shortcomings of the Medicaid program alone.

1. Medicaid HCBS waiver authorities include Section 1915 (c) and Section 1115. For additional background on these authorities, see Kaiser Family Foundation, Streamlining Medicaid Home and Community-Based Services: Key Policy Questions (March 2016), https://modern.kff.org/medicaid/issue-brief/streamlining-medicaid-home-and-community-based-services-key-policy-questions/. ↩︎
2. This total reflects individuals on waiting lists in 39 of 40 states reporting waiting lists for Section 1915 (c) and/or Section 1115 HCBS waivers. It omits New York, which reports a waiting list for people with mental health disabilities but was unable to report the number of individuals on that list. It includes partial data for Alabama, which reported waiting list enrollment for seniors and adults with physical disabilities but reported enrollment on its waiting list for people with I/DD as unknown. It also includes partial data for California, which reported waiting list enrollment for its Section 1915 (c) waivers serving seniors and/or adults with physical disabilities and people with HIV/AIDS, but did not report enrollment on its Section 1115 waiting list for seniors and adults with physical disabilities. In addition, the following states did not respond to the question about whether there is a waiting list for the following target populations: Georgia for people with mental health disabilities, New Jersey for people with I/DD, New York for seniors and adults with physical disabilities and people with TBI/SCI, and Virginia for adults with physical disabilities. ↩︎
3. Beginning in 2016, totals include Section 1915 (c) and Section 1115 HCBS waiver waiting lists; prior years include only Section 1915 (c) waiver waiting lists. Forty-eight states offer at least one Section 1915 (c) HCBS waiver; the remaining three (AZ, RI, and VT) serve all HCBS populations through Section 1115 waivers. Eight states (CA, DE, HI, NJ, NM, NY, TN, and TX) serve some HCBS populations through Section 1915 (c) waivers and others through Section 1115 waivers. For a timeline of when states began moving populations from Section 1915 (c) to Section 1115 waivers, see Kaiser Family Foundation, Medicaid Home and Community-Based Services Enrollment and Spending (April 2019), https://modern.kff.org/medicaid/issue-brief/medicaid-home-and-community-based-services-enrollment-and-spending. ↩︎
4. See supra., n.2. ↩︎
5. See supra., n.3. ↩︎
6. Each Section 1915 (c) waiver generally is targeted to a particular population, while a single Section 1115 waiver can include multiple populations, each of whom otherwise would have to be served under separate Section 1915 (c) waivers. ↩︎
7. Kaiser Family Foundation, Medicaid Home and Community-Based Services Enrollment and Spending (April 2019), https://modern.kff.org/medicaid/issue-brief/medicaid-home-and-community-based-services-enrollment-and-spending. ↩︎
8. Total includes data reported by 27 of 40 states with waiver waiting lists. The other 13 states with waiver waiting lists were unable to report this data (AR, IL, KY, ME, MN, NV, NY, OH, OR, PA, TN, VA, and WI). ↩︎
9. Thirty-seven of 51 states with waivers serving people with I/DD report waiting lists. Waiting list enrollment includes 36 states. The other state, Alabama, reports unknown enrollment on its waiting list for people with I/DD. In addition, New Jersey did not report whether it has a waiting list for people with I/DD. ↩︎
10. Twenty of 51 states with waivers serving seniors and/or adults with physical disabilities report waiting lists. Waiting list enrollment reflects partial data for California, which reported waiting list enrollment for its Section 1915 (c) waivers serving seniors and/or adults with physical disabilities but was unable to report waiting list enrollment for its Section 1115 waiver serving these populations. In addition, New York did not report whether it has a waiting list for its Section 1115 waiver serving seniors and adults with physical disabilities. Virginia reported no waiting list for its waiver that serves both seniors and adults with physical disabilities but did not report whether it has a waiting list for another waiver for adults with physical disabilities. ↩︎
11. Six of 18 states with waivers serving children who are medically fragile or technology dependent report a waiting list. ↩︎
12. Eight of 25 states with waivers serving people with TBI/SCI report a waiting list. In addition, New York was unable to report whether its TBI/SCI waiver has a waiting list. ↩︎
13. Four of 14 states with waivers serving people with mental health disabilities report a waiting list. Waiting list enrollment includes three states. The other state, New York, reports unknown enrollment on its waiting list for people with mental health disabilities. In addition, Georgia was unable to report whether its mental health waiver has a waiting list. ↩︎
14. One of 10 states with waivers serving people with HIV/AIDS reports a waiting list. ↩︎
15. Of the 40 states reporting one or more waivers with a waiting list in 2017, 27 reported average wait time for at least one waiver with a waiting list (AL, AK, AR, CA, CO, CT, FL, GA, IN, IA, KS, LA, MD, MI, MS, MT, NE, NV, NH, NM, NC, OK, OR, SD, TX, WV, and WY), and 13 (IL, KY, ME, MN, ND, NY, OH, PA, SC, TN, UT, VA, and WI) did not report average wait time for any waivers with waiting lists. ↩︎
16. The exception is West Virginia. ↩︎
17. Within a state, some waivers prioritize only one group, while other waivers may give priority to more than one group. ↩︎
18. States implemented the ACA Medicaid expansion in January 2014, except for AK (9/2015), IN (2/2015), LA (7/2016), ME (1/2019), MI (4/2014), MT (1/2016), NH (8/2014), PA (1/2015), and VA (1/2019). ME and VA are counted as non-expansion states for the time period analyzed in this brief (2013-2017), as are ID, NE, and UT, which have adopted but not yet implemented expansion as of 2019. See generally Kaiser Family Foundation, Status of State Action on the Medicaid Expansion Decision (Feb. 13, 2019). ↩︎
19. For additional background, see Kaiser Family Foundation, Streamlining Medicaid Home and Community-Based Services: Key Policy Questions (March 2016), https://modern.kff.org/medicaid/issue-brief/streamlining-medicaid-home-and-community-based-services-key-policy-questions/. ↩︎
20. In Olmstead, the Supreme Court held that the unjustified institutionalization of people with disabilities violates the Americans with Disabilities Act. Kaiser Family Foundation, Olmstead’s Role in Community Integration for People with Disabilities Under Medicaid: 15 Years After the Supreme Court’s Olmstead Decision (June 2014), https://modern.kff.org/medicaid/issue-brief/olmsteads-role-in-community-integration-for-people-with-disabilities-under-medicaid-15-years-after-the-supreme-courts-olmstead-decision/; Kaiser Family Foundation, Medicaid Beneficiaries Who Need Home and Community-Based Services: Supporting Independent Living and Community Integration (March 2014), https://modern.kff.org/medicaid/report/medicaid-beneficiaries-who-need-home-and-community-based-services-supporting-independent-living-and-community-integration/. ↩︎
21. Previous analysis shows that nearly six in 10 (57%) nonelderly Medicaid adults have a disability but do not receive SSI benefits, meaning that they are eligible for Medicaid through another pathway, such as the Medicaid expansion in states that have adopted that pathway. Kaiser Family Foundation, How Might Medicaid Adults with Disabilities Be Affected by Work Requirements in Section 1115 Waiver Programs? (January 2018), https://modern.kff.org/medicaid/issue-brief/how-might-medicaid-adults-with-disabilities-be-affected-by-work-requirements-in-section-1115-waiver-programs/. ↩︎
22. Kaiser Family Foundation, The Affordable Care Act’s Impact on Medicaid Eligibility, Enrollment, and Benefits for People with Disabilities (April 2014), https://modern.kff.org/health-reform/issue-brief/the-affordable-care-acts-impact-on-medicaid-eligibility-enrollment-and-benefits-for-people-with-disabilities/. ↩︎
23. Most ACA expansion states opt to align their expansion adult benefit package with their traditional state plan benefit package, by offering all state plan services to expansion adults if medically necessary. ↩︎
24. Kaiser Family Foundation, Key State Policy Choices About Medicaid Home and Community-Based Services (April 2019), https://modern.kff.org/medicaid/issue-brief/key-state-policy-choices-about-medicaid-home-and-community-based-services. ↩︎
25. These states include AK, IA, IL, KY, NE, OH, OK, TN, and TX. ↩︎
26. Includes data reported by 28 of 40 states with waiver waiting lists. The 12 other states with waiver waiting lists were unable to report this data (GA, IL, KY, ME, MN, NM, OH, PA, TN, TX, VA and WY). ↩︎
27. Medicaid finances 52% of long-term services and supports nationally in 2017. KFF estimates based on 2017 National Health Expenditure Accounts data from CMS, Office of the Actuary. ↩︎