Over 115 million individuals live in the American South today, and together, they account for over one-third (37%) of the total U.S. population. The South is racially and ethnically diverse and home to a large share of the nation’s people of color. As such, efforts to improve health in the South have significant implications for the advancement of health and health equity nationwide.

The South has faced longstanding disparities in health and health care, although significant variation exists between southern states. As a group, compared to those in other regions, Southerners are more likely to be uninsured, less likely to have access to needed health services, and more likely to experience a number of chronic health conditions. Yet, many southern states have also adopted innovative approaches to improve their health systems, particularly in the delivery of care, that provide key lessons for improving access to health coverage in the South more broadly.

Health Coverage and Care in the South: A Chartbook provides key data on the demographic and economic characteristics of the southern population as well as their health status, health insurance coverage, and access to care today.

Together, these data offer a snapshot of health care in the South, highlighting both opportunities for advancement and challenges relating to improving health care and health equity looking forward.

Section 1: Demographics

Section 2: The Southern Economy

Section 3: Health Status

Section 4: Health Insurance Coverage

Section 5: Access to Care, Delivery Systems, and the Safety Net

Section 6: Medicaid’s Broader Role

Over one third of the total U.S. population resides in the 17 southern states, and the population has been growing over time. The southern population is racially and ethnically diverse, although the racial and ethnic composition varies by state. Overall, over four in ten of all people of color in the U.S. reside in the South, including over half of Blacks in the United States. The region is also diverse across a number of factors including citizenship status, age, urban-rural composition, and income.

The southern states play an important role in the national economy, contributing 35 percent of the total U.S. gross domestic product. Work patterns in the South are similar to those in other regions, although Southerners are less likely than those in other regions to be unemployed. Overall, Southerners earn less per capita than individuals in other regions of the U.S. However, income varies significantly by state, and, in four states, per capita earnings are higher than the national average. Earnings also vary widely within states, and several southern states have among the highest levels of income inequality in the country.

While measures of health status vary by state, Southerners as a group are generally more likely than those in other regions to have a number of chronic illnesses and experience worse health outcomes. For example, most of the states with the highest rates of obesity and diabetes are in the South, and many southern states are among those with the highest infant mortality rates and cancer death rates in the country. As in other regions, health status within the South also varies by race and ethnicity, and Blacks in particular, are more likely than Whites to report having fair or poor health.

While a broad array of factors contribute to the relatively high chronic disease rates and poor health outcomes in the South, a first step in addressing these disparities is ensuring that individuals have health coverage that enables them to access preventive and primary care and ongoing treatment to meet their health needs. Health insurance coverage facilitates timely access to health services, and being uninsured affects people’s ability to obtain needed medical care as well as their financial security. Compared to individuals in other regions, Southerners are more likely to be uninsured. Further, within the South, people of color are more likely than Whites to be uninsured. Coverage rates in the South vary by state, however, reflecting variation in demographics and the availability of health coverage options.The Affordable Care Act has the potential to extend health coverage to many currently uninsured Southerners through an expansion of Medicaid to low-income individuals and the creation of new health insurance Marketplaces with financial assistance to help moderate-income individuals purchase private coverage. Because many southern states are not implementing the Medicaid expansion, many uninsured adults in the South will not gain a new coverage option. However, nearly half of uninsured individuals are eligible for some financial assistance to obtain coverage in 2014, largely through the Marketplace, and millions of eligible individuals have already enrolled.

To improve health outcomes in the long term, it will be important to ensure that all individuals are able to obtain needed primary and specialty health care services. Southerners have historically been more likely than those in other regions to report difficulty accessing and paying for needed care.

States are increasingly relying on a number of tools to improve provider capacity and reform the delivery of care including expanding the use of Medicaid managed care, increasing payment to providers, and revising scope of practice laws to allow nurse practitioners to treat patients with fewer restrictions. Even with improvements to the delivery and coordination of care, however, community health centers and other safety net providers in the South will likely continue to serve an important role in providing care to some of the region’s most vulnerable low-income populations including the uninsured, people of color, homeless individuals, and those with limited English proficiency.

Medicaid is both an expenditure and a source of federal revenue in state budgets. The program is funded jointly by states and the federal government through a matching formula based on a state’s personal income, and in many southern states, where per capita personal income is less than the national average, the federal government pays at least two dollars for every dollar states spend on their programs. Overall, the federal government funds the majority of Medicaid costs in the South, although the way in which states finance their share of spending on Medicaid and its impact on their budgets varies by state.

As in other regions and in the United States generally, Medicaid spending in the South is concentrated among a small number of high-need enrollees. Children and adults in the South account for a large majority of Medicaid enrollees but less than 40 percent of expenditures. The elderly and disabled, who make up only about one quarter of Medicaid enrollees, account for nearly two-thirds of spending. Looking forward, efforts to improve care and control costs in Medicaid will likely focus on these high-need, high-cost beneficiaries.

Given the growing and diverse population in the South, changing patterns of health coverage and care in the region have important implications nationally and for people of color. As such, continued attention to health coverage and care in the South for those gaining coverage and those remaining uninsured will be important for understanding the impact of the ACA and implications for longstanding efforts to reduce disparities in coverage, care, and health outcomes.

January 1, 2014 marked the beginning of several provisions of the Affordable Care Act (ACA) making significant changes to the non-group insurance market, including new rules for insurers regarding who they must cover and what they can charge, along with the opening of new Health Insurance Marketplaces (also known as “Exchanges”) and the availability of premium and cost-sharing subsidies for individuals with low to moderate incomes. Data from the Department of Health and Human Services and others provide some insight into how many people purchased insurance using the new Marketplaces and the types of plans they picked, but much remains unknown about changes to the non-group market as a whole.

The Kaiser Family Foundation Survey of Non-Group Health Insurance Enrollees is the first in a series of surveys taking a closer look at the entire non-group market. This first survey was conducted from early April to early May 2014, after the close of the first ACA open enrollment period. It reports the views and experience of all non-group enrollees, including those with coverage obtained both inside and outside the Exchanges, and those who were uninsured prior to the ACA as well as those who had a previous source of coverage (non-group or otherwise).

The ACA motivated many non-group enrollees to get coverage, and nearly six in ten Exchange enrollees were previously uninsured

The survey finds that roughly two-thirds of those with non-group coverage are now in ACA-compliant plans, while three in ten have coverage they purchased before the ACA rules went into effect (referred to as “non-compliant plans” throughout this report). About half of all non-group enrollees now have coverage purchased from a Health Insurance Exchange, and nearly six in ten (57 percent) of those with Exchange coverage were uninsured prior to purchasing their current plan. Most of this previously uninsured group reports having gone without coverage for two years or more, and for many the ACA was a motivator in seeking coverage; seven in ten of those who were uninsured prior to purchasing a Marketplace plan say they decided to buy insurance because of the law, while just over a quarter say they would have gotten it anyway.

Enrollees in ACA-compliant plans report somewhat worse health than those in pre-ACA plans

While government data have provided some basic demographic information about Exchange plan enrollees, there has been no reliable information to date about the demographics of those enrolling in non-Exchange plans, or about the health status of either of these groups. The survey finds that the age and gender distribution is similar for those in ACA-compliant plans purchased inside and outside the Marketplace; overall, a third (34 percent) of adults with compliant plans are under age 35 and half (47 percent) are male. The survey does, however, find a difference in self-reported health status that may have implications for insurance market risk pools: those in compliant plans are more likely than those in non-compliant plans to report being in fair or poor health (17 percent versus 6 percent). This difference is largely driven by those with Exchange coverage, among whom 20 percent rate their health as fair or poor.

Majority gives positive ratings to their new insurance plans and says they are a good value, though four in ten find it difficult to afford their monthly premium

Overall, the majority of non-group enrollees rate their coverage as excellent or good, believe it is a good value for what they pay for it, and say they are satisfied with various aspects of their plans. Satisfaction is highest for choice of providers but somewhat lower for plan costs, and among those in compliant plans, about a third say they are not satisfied with their premiums and deductibles. Most feel well-protected by their plans and express confidence in their ability to pay for their usual medical costs, but some evidence of financial strain remains. Nearly half of those in ACA-compliant plans say they’re not confident they would be able to afford to pay for a major illness or injury, over four in ten say it is difficult to afford their monthly premiums, and over six in ten say they are worried that their premiums will become unaffordable in the future.

Among plan switchers, as many report paying less as paying more for their new plans, but survey shows some signs of a trend toward narrower provider networks

Among those who previously bought non-group insurance and have switched to a new, ACA-compliant plan (referred to as “plan switchers” throughout this report), nearly half (46 percent) say their current premium – taking into account government subsidies – is lower than it was under their previous plan, while four in ten (39 percent) say it is higher. This group’s responses to other survey questions suggest that the coverage they are getting is, on average, similar to what they had before. There is, however, some evidence of a trend toward plans with narrower provider networks. While over half of plan switchers say their choice of providers is “about the same” under their new plan as under their old plan, those who report a change in the amount of choice available are more likely to say they have less choice than more choice when it comes to primary care doctors (32 percent versus 10 percent) and specialists (24 percent versus 11 percent).

Plan switchers are less likely to be satisfied with plan costs, maybe because half of them report having their previous plan cancelled

Despite the fact that plan switchers are just as likely to say their premiums went down as went up under their new plan, this group stands out as being less satisfied with their plan costs and less likely to perceive their coverage as a good value compared to those in compliant plans who were previously uninsured. This may be related to the fact that about half of plan switchers report having received a cancellation notice from their previous insurer.

Half got help with enrollment; most say the shopping process was easy, but a third say it was difficult to set up a Marketplace account

Early problems with Healthcare.gov and many Exchange websites were widely reported in the media, and the survey finds that the Internet was the most commonly reported method of shopping and enrollment. However, it was not the only method; about a third of those with Exchange coverage and over half of those with compliant coverage purchased off-Exchange say they spent no part of the shopping and enrollment process on the Internet, and substantial shares report completing at least part of the enrollment process on the telephone or in person with someone helping them out. Overall, half of those in ACA-compliant plans say they got help with the enrollment process. Despite media reports of website and enrollment problems, most people in ACA-compliant plans purchased both on and off the Exchanges say it was at least somewhat easy to compare costs and coverage when shopping for plans. Still, 35 percent of Exchange enrollees in states using Healthcare.gov and 30 percent of those in states with their own Exchange websites say it was at least somewhat difficult to set up an account with the marketplace.

In the non-group market, those most likely to feel they have benefited from the ACA are people getting subsidies, those most likely to feel negatively impacted are those who had their plans cancelled

As a whole, non-group enrollees are more likely than the public overall to have a favorable view of the ACA – they are roughly evenly split between positive and negative views (47 percent favorable, 43 percent unfavorable), while views among 18-64 year-olds nationally are more negative than positive (38 percent favorable, 46 percent unfavorable¹ ). Like it is nationally, opinion of the ACA among non-group enrollees is strongly divided along party lines. About equal shares of non-group enrollees feel their families have benefited (34 percent) and been negatively affected (29 percent) by the ACA. However, these averages mask substantial differences within the non-group market. Those who are most likely to feel they have benefited from the law are people receiving government financial assistance for Exchange plan premiums (60 percent benefited), while those most likely to feel they have been negatively affected by the law are people who experienced a plan cancellation in the past year (57 percent negatively affected).

About The Groups Described In This Report

This survey reports on the views and experiences of all people purchasing health insurance coverage in the non-group market. However, because of the complexities of the market and the changes brought about by the ACA, much of this report breaks out responses by different subgroups based on how they obtained their coverage and their previous insurance status. The ACA made major changes to the non-group insurance market, including new rules that standardize coverage, guarantee access to those with pre-existing conditions, and provide subsidies based on income for those buying coverage through new Health Insurance Exchanges (also known as Marketplaces; these terms are used interchangeably throughout this report).

Those rules took effect for coverage beginning on or after January 1, 2014. People were able to purchase this “ACA-compliant” coverage either through an Exchange or directly from an insurance company during an open enrollment period that began October 1, 2013 and ended March 31, 2014 (with some opportunities for special enrollment periods after that). This survey includes individuals who purchased these new ACA-compliant plans, as well as people who are currently enrolled in “non-compliant” plans, including those who were grandfathered under the ACA because they were purchased before the law went into effect, those who renewed policies last year or bought coverage that began before January 1, and those who have been able to keep their old policies for a period of time under a federal transition policy at the discretion of states.

A more detailed breakdown of the main groups described in this report is provided below.

Total non-group market: All individuals ages 18-64 whose primary source of health insurance coverage is a plan they purchased themselves, either directly from an insurance company or through a state or federal Health Insurance Marketplace, regardless of plan start date (see Survey Methodology for more details on inclusion criteria).

ACA-compliant plans (68% of total non-group market2 ): Allplans that took effect on or after January 1, 2014, including those purchased through a state or federal Marketplace and those purchased directly from an insurance company.

Exchange plans (48% of total non-group market): Plans that were purchased from a state or federal Health Insurance Exchange, including Exchange plans purchased through a health insurance agent or broker.

Compliant, non-Exchange plans (16% of total non-group market): Plans that took effect on or after January 1, 2014 that were purchased directly from an insurance company, including non-Exchange plans purchased through a health insurance agent or broker.

ACA-compliant plans by prior insurance status3 :

Previously uninsured, now in ACA-compliant plan (34% of total non-group market): Those with ACA-compliant plans who say they were uninsured immediately prior to purchasing their current plan.

Plan switchers (those who switched from a non-compliant to a compliant plan, 13% of total non-group market): Those with ACA-compliant plans who say they were covered by a different non-group plan (presumably, a non-compliant plan) immediately prior to purchasing their current plan, including those who chose to switch and those who had their prior plans cancelled.

Previously employer-sponsored insurance/COBRA (12% of total non-group market): Those with ACA-compliant plans who say they were covered by an employer-sponsored plan or COBRA immediately prior to purchasing their current plan.

Non-compliant plans (31% of total non-group market): Plans purchased outside the Health Insurance Exchange that took effect before January 1, 2014.

Section 1: Basic Demographics Of The Non-Group Market

Among the entire non-group market, about half of individuals (48 percent) report having coverage obtained from a state or federal Health Insurance Exchange, 16 percent have ACA-compliant coverage purchased outside of the Exchanges, and three in ten (31 percent) have non-ACA-compliant plans (those that have been in effect since before January 1, 2014).

One of the questions that has yet to be answered by state and federal data is what share of enrollees in ACA-compliant plans were previously uninsured. The survey finds that half of all those with compliant plans report being uninsured just prior to purchasing their current plan, while about one in five each say they were previously covered by another non-group plan (19 percent) or had employer coverage or COBRA (18 percent), and 9 percent previously had Medicaid or other public coverage. Exchange enrollees are more likely to say they were previously uninsured (57 percent), while those buying ACA-compliant plans outside the government marketplace are more likely to report having previous employer coverage (30 percent) or other non-group coverage (27 percent).

Among those who were previously uninsured and enrolled in a Marketplace plan, most say the reason they previously lacked coverage was because they couldn’t afford it or had no access to employer-sponsored insurance. Most of this group had been uninsured for a long time – seven in ten (71 percent) say that before buying their current plan they had been uninsured for two years or more, including 45 percent who say they were uninsured for at least five years. Seven in ten (72 percent) of the previously uninsured in Exchange plans say they decided to buy their own health insurance because of the ACA, while just over a quarter (26 percent) say they would have gotten insurance anyway, even without the law. These shares are similar when based on all those in ACA-compliant who were uninsured prior to purchasing their current plan.

Data from the Department of Health and Human Services provide some basic demographics, including the age and gender distribution, for individuals who signed up for Exchange plans.4  However, so far there has been no reliable information about the demographics of those enrolling in non-Exchange plans as well, or about the health status of either of these groups. The survey finds that the age and gender distribution is similar for those in ACA-compliant plans purchased inside and outside the Marketplace; overall, a third (34 percent) of adults with compliant plans are under age 35 and slightly fewer than half (47 percent) are male. By comparison, those with non-compliant plans are somewhat younger (44 percent under age 35) and more likely to be male (56 percent). Nearly two-thirds (64 percent) of those with ACA-compliant plans report having individual coverage, while those with non-compliant plans are more evenly split between individual (47 percent) and family coverage (53 percent). (See Appendix Table 1 for more details.)

The health status of enrollees has particular significance because it has implications for whether premiums this year will be adequate to cover the health expenses of enrollees and how much insurers may increase premiums for next year. Since people are now guaranteed coverage regardless of their health, there has been an expectation that some people with pre-existing conditions who were previously denied access to insurance will enroll. However, there has been substantial uncertainty about whether healthier people will enroll as well, motivated by premium subsidies and the ACA’s requirement that people have coverage or pay a penalty.

While the majority of individuals in non-group plans report being in good health, the survey finds that those with ACA-compliant plans – which insurers rate as a single risk pool – are more likely than those with non-compliant plans to report their health as “only fair” or “poor” (17 percent versus 6 percent). This suggests that people in new, ACA-compliant plans are somewhat sicker than those in the non-group market previously, some of whom have been able to retain their non-compliant coverage under transition policies. What this might mean for premiums in the non-group market is still uncertain, however, since many insurers anticipated a sicker-than-average mix of enrollees when they set their premiums for this year.

Section 2: How Do People In Different Groups Feel About Their Coverage?

The large majority of those with ACA-compliant plans purchased both inside and outside the Exchanges rate their coverage as excellent or good (72 percent of those with Exchange plans and 70 percent of those with non-Exchange plans). Those in non-compliant plans are even more likely to give high marks to their plans (85 percent), though this is offset by a larger share of those in compliant plans saying they don’t know how to rate their plans rather than a larger share giving their coverage poor marks, likely a reflection of the fact that most of those in compliant plans had only recently purchased coverage when the survey was conducted. Responses to this question are also similar to those given by people with employer-sponsored insurance in a separate national survey conducted in May.5  (See Appendix Table 2 for more details.)

More than half of those in compliant plans say their insurance is an excellent or good value for what they pay for it, though roughly four in ten rate the value as “only fair” or “poor,” similar to the shares among those with non-compliant plans. By comparison, those with employer-sponsored coverage interviewed in a separate national survey were more likely to rate their plan as an excellent or good value, likely reflecting the fact that for most of them, the employer pays a large portion of the premium.6 

Majorities of those with ACA-compliant coverage report being satisfied with various aspects of their plans, including their choice of providers and plan costs such as premiums, deductibles, and copays. Satisfaction with choice of doctors and hospitals is higher than with plan costs, and among those in compliant plans, about a third report being unsatisfied with their premiums (33 percent) and deductibles (34 percent). While the large majority of those in compliant plans say they are satisfied with their choice of providers, about one in five say they are unsatisfied with their choice of specialists (20 percent), primary care doctors (19 percent), and hospitals (15 percent). Dissatisfaction with provider choice is somewhat higher among those in ACA-compliant plans than among those in non-compliant plans or among people with employer-sponsored coverage interviewed as part of a separate national survey (in the range of 5-7 percent for each of these measures, see Appendix Table 3 for more details).

More specifically when it comes to premiums, the survey finds that among those who previously bought non-group insurance and have switched to a new, ACA-compliant plan (referred to here as “plan switchers”), nearly half (46 percent) say their premium is lower under their current plan than it was under their previous plan, and about four in ten (39 percent) say it is higher.

Survey responses for plan switchers also indicate that their deductibles and level of coverage are, on average, similar to what they had in their previous plans. Roughly a third each of this group says their current deductible is higher, lower, and about the same as under their previous non-group plan. Similarly, when asked about the range of covered services and level of financial protection offered under their new plans, about four in ten plan switchers say these things are about the same, while roughly equal shares say they are better and worse.

Responses among plan switchers do offer some evidence of a trend toward plans with narrower networks. While over half say their choice of providers is “about the same” under their new plan as under their old plan, those reporting a change in the degree of choice are more likely to say they have less choice versus more choice when it comes to primary care doctors (32 percent versus 10 percent) and specialists (24 percent versus 11 percent).

Despite the fact that most plan switchers report paying similar premiums and getting similar coverage compared to their previous plans, this group stands out as being less satisfied with their plan costs and less likely to perceive their coverage as a good value compared to those in compliant plans who were previously uninsured. For example, 51 percent of plan switchers say the value of their coverage for what they pay for it is “only fair” or “poor”, compared with 32 percent of those who were previously uninsured. Similarly, plan switchers are twice as likely to say they are not satisfied with their premium compared with those who were previously uninsured (51 percent versus 25 percent). These differences may be related to the fact that about half of plan switchers report having received a cancellation notice from an insurer in the past year, compared with very small shares of those who were uninsured or had employer coverage before purchasing their current plan (see Appendix Tables 2 & 3 for more details).

What People Know And Don’t Know About Their Coverage

Health insurance is complicated, and many previous studies have documented gaps in health insurance literacy among consumers. The survey finds evidence of this among those who purchase their own coverage, with many respondents unable to answer some basic questions about their plans. For example, nearly one in five non-group enrollees (18 percent) say they don’t know the amount of their monthly premium and almost four in ten (37 percent) don’t know the amount of their annual deductible. Among those with ACA-compliant plans, three in ten (30 percent) say they don’t know the metal level of their plan (platinum, gold, silver or bronze)7 , and among those who report getting a government subsidy to defray their premium cost, nearly half (47 percent) couldn’t say what the amount of the subsidy is.

Some groups are more knowledgeable than others, including college graduates, those with higher incomes, and small business owners. Plan switchers, who likely have more experience buying coverage in the non-group market, are also more likely than those who were previously uninsured to be able to report the metal level of their plan and their premium and deductible amounts.

In addition to knowledge gaps about their own plans, a third (33 percent) of those with non-group coverage are unaware that the ACA provides financial assistance to help low- and moderate-income Americans purchase coverage. Those in compliant plans purchased outside the Exchanges (53 percent) are the least likely to know that the ACA provides these subsidies, while awareness is somewhat higher among those in non-compliant plans (66 percent) and highest among those with Exchange coverage (76 percent).

Despite these gaps in knowledge, most people with non-group coverage feel they have a pretty good idea of what their plan covers (75 percent say they understand this “very” or “somewhat” well) and what they will have to pay out-of-pocket when they use services (83 percent). This is true even among those who were uninsured before purchasing their current plan (See Appendix Table 4).

Section 3: Affordability And Financial Protection

Health insurance brings with it a measure of financial security. Among those with ACA-compliant coverage, more than half (56 percent) say they feel well-protected by their health plans, including 59 percent of those who were previously uninsured. Still, this leaves over a third saying they feel vulnerable to high medical bills, rising to 51 percent in the “plan switchers” group. Those with non-compliant plans are more likely to say they feel well-protected, with the difference between the compliant and non-compliant groups largely driven by the “plan switchers” (see Appendix Table 5 for more details). By comparison, people with employer-sponsored coverage interviewed as part of a separate national survey are also more likely than those in compliant plans to say they feel well-protected (again, not surprising due to the fact that employer plans tend to have lower patient cost-sharing than non-group coverage and employers generally cover a portion of the premium).

Feelings of vulnerability may stem more from worries about unexpected medical costs rather than concerns about paying for routine care. Nearly two-thirds (63 percent) of those with compliant plans say they feel confident about paying for “usual” medical costs, but a somewhat smaller share (52 percent) say they feel confident about paying for a serious illness. This leaves nearly half (46 percent) feeling “not too confident” or “not at all confident” that they would have enough money or insurance to pay for a major illness or injury. Those with non-compliant plans are more likely to feel confident about paying for both types of costs, perhaps related to the fact that they report their previous year’s income as higher than those with compliant plans. Health status may also play a role; enrollees in non-compliant plans are more likely to report they are in excellent or good health status compared to those in compliant plans. Looking at the non-group market as a whole (including those in compliant and non-compliant plans), those in fair or poor health are less likely to say they are confident about paying for routine care than their healthier counterparts (55 percent versus 71 percent). (See Appendix Table 6 for more details.)

Despite the fact that most people report being satisfied with their premiums, cost pressures remain. Overall, forty-three percent of those with ACA-compliant plans say it is “very” or “somewhat” difficult for them to afford to pay their premium each month.

The ACA’s premium tax credits were designed to help alleviate affordability concerns for people with low and moderate incomes. The survey finds that nearly half (46 percent) of Exchange enrollees say they are getting financial help from the government to help pay their monthly premium, which is substantially lower than official data (according to the Department of Health and Human Services, 85 percent of those selecting a plan in the Marketplace qualified for a premium tax credit).8  Multiple factors may be contributing to this apparent under-reporting on the survey, but it is likely that at least some individuals receiving government financial help may be unaware that the government is paying a portion of their premium. As noted in the section above on health literacy, insurance concepts are complicated and many people have trouble reporting detailed information about their plans. During the enrollment process, some people may have been focused on the bottom line question of “What do I pay?” and less focused on whether that amount was subsidized or not. Still, the vast majority (85 percent) of those who do report getting assistance – representing 39 percent of all Exchange enrollees – say they would not have been able to afford insurance without this financial help.

Most people with non-group insurance also express at least some level of worry about their future ability to afford and access care and insurance. For example, about six in ten (62 percent) say they are “very” or “somewhat” worried that their insurance company will raise their premium so much that they will no longer be able to afford insurance. Among those who report receiving government subsidies, over half (54 percent) say they are worried that their income will change and they will no longer be eligible for this financial help.

Section 4: The Process Of Shopping For And Obtaining Coverage

Early problems with Healthcare.gov and many state Exchange websites were widely reported in the media, and the survey finds that about two-thirds of Exchange enrollees and nearly half (47 percent) of those with compliant coverage purchased outside the Exchanges spent at least some part of the shopping and enrollment process on the Internet. Other methods of shopping and enrollment were also common, however. Roughly half of Exchange enrollees and about four in ten non-Exchange purchasers report spending at least part of the process on the phone, while just over a quarter (27 percent) of those with Exchange plans and more than four in ten (43 percent) of those with non-Exchange plans say they spent time in person with someone helping them sign up for coverage. Internet enrollment required the biggest time investment for the largest share of people, with 18 percent of Exchange enrollees and 16 percent of non-Exchange purchasers saying they spent at least 5 hours shopping and enrolling on the web.

Overall, half of those in ACA-compliant plans say they got outside help with the enrollment process, while the other half say they completed the process on their own. The most common source of help for people with Exchange coverage was an Exchange representative (24 percent), while the most common source of help for those with coverage obtained outside the Exchanges was a health insurance broker or agent (24 percent).

Perhaps surprisingly given the extent to which Exchange website problems were reported in the media, most people in ACA-compliant plans purchased on and off the Exchanges say it was at least somewhat easy to compare costs and coverage when shopping for plans.9  Still, 35 percent of Exchange enrollees in states using Healthcare.gov and 30 percent of those in states with their own Exchange websites say it was at least somewhat difficult to set up an account with the marketplace, and roughly three in ten say it was difficult to figure out if their income qualified them for financial assistance.

When it comes to choosing their current plan, those with compliant coverage report considering a variety of factors as important to their health plan choice, with costs rising to the top of the list. Among those who considered multiple plans, eight in ten (80 percent) say the monthly premium was a “very” or “extremely” important factor in choosing their current plan over other choices available, and seven in ten (72 percent) say the same about the plan’s copay and deductible. Somewhat fewer – though still sizeable shares – report placing a lot of importance on provider choice and covered benefits (63 percent each), while far fewer say recommendations from friends or family were an important factor (24 percent).

Section 5: How Do Non-Group Enrollees Feel About The ACA?

Overall, those with non-group insurance coverage are more likely to have a favorable view of the ACA than the public at large. Views among non-group enrollees are roughly evenly split between favorable (47 percent) and unfavorable (43 percent), while among adults nationwide in the same age range, more have an unfavorable view of the law (46 percent) than a favorable one (38 percent).10 

However, the average above masks some differences within the non-group market. Majorities have a favorable view of the ACA among those with Exchange plans (58 percent) and those who were previously uninsured (53 percent). On the other side, majorities of those in non-compliant plans and those who switched from a non-compliant to a compliant one (the “plan switchers”) express an unfavorable view of the law (52 percent and 53 percent, respectively).

As has been the case nationally since the passage of the ACA, partisanship plays a major role in people’s views of the ACA among those in the non-group market as well, with a large majority of Republicans (78 percent) expressing an unfavorable view of the law, a large majority of Democrats (69 percent) expressing a favorable view, and independents almost evenly split (44 percent favorable, 48 percent unfavorable).

On balance, those with ACA-compliant plans are about twice as likely to say the law has made it easier rather than harder for them to shop and compare health plans (41 percent easier, 19 percent harder) and to find affordable coverage (44 percent easier, 20 percent harder). Similarly, about twice as many say the law has increased (38 percent) rather than decreased (19 percent) the health plan choices available to them. In each of these areas, those with Exchange coverage and those who were uninsured prior to purchasing their current plan are more likely to say the law has made things easier, while those with non-Exchange coverage are more likely to say the law hasn’t made a difference and plan switchers are more mixed as to the law’s impact.

When asked about the overall impact of the ACA on their own families, similar shares of non-group enrollees report that they’ve benefited (34 percent) and been negatively affected (29 percent) by the law. Among the 34 percent who report benefiting, the main ways in which they feel the law has helped them are lower costs and expanded access to care and insurance. The 29 percent who feel they’ve been negatively affected are most likely to cite increased costs, followed far behind by a range of concerns like opposition to the individual mandate, cuts to benefits or choices, and policy cancellations.

Again, these averages mask some important differences within the non-group market. Those most likely to feel their families have benefited from the law include those with Exchange plans who report receiving government subsidies (60 percent), Exchange enrollees overall (54 percent), and the previously uninsured (50 percent). Those most likely to say the law has had a negative impact on their families include those who report experiencing a coverage cancellation in the past 12 months (57 percent), those who purchased ACA-compliant plans outside the Exchanges (48 percent), and the “plan switchers” who previously had other non-group coverage and are now in a compliant plan (47 percent).

Conclusion and Implications

The Affordable Care Act changes the non-group health insurance market substantially, requiring insurers to accept all applicants regardless of their health, standardizing coverage, creating new health insurance Exchanges to facilitate shopping for insurance, and providing income-based premium and cost-sharing subsidies. The Exchanges, along with expanded eligibility in Medicaid, are the primary mechanism for reducing the number of uninsured Americans under the ACA.

Currently, about two-thirds of non-group enrollees are in plans that meet all of the new rules (“ACA-compliant plans”), most of whom have purchased coverage through an Exchange. Three in ten remain in non-compliant plans, which includes those who were grandfathered under the ACA because they were purchased before the law went into effect, those who renewed policies last year or bought coverage that began before January 1, and those who have been able to keep their old policies for a period of time under a federal transition policy at the discretion of states. Over time, fewer people will remain in non-compliant plans as they lose or drop their coverage, and the only new plans available in the marketplace are those that comply with the ACA’s rules.

The new rules in the non-group market not only create new coverage opportunities for those who were previously uninsured, but they also mean changes for people who were buying their own coverage before the ACA took effect, in some cases creating disruption and in others better coverage at lower cost. The survey findings illustrate some of the real and perceived impacts of these changes on different groups.

For example, the survey finds that nearly six in ten of those now covered by Exchange plans were uninsured prior to signing up. The previously uninsured are one of the groups most likely to believe they have benefited from the ACA, and seven in ten of them say they would not have gotten coverage without the law. On the other side, people who were previously covered by non-group insurance and switched to an ACA-compliant plan (including those whose previous policies were cancelled because they didn’t meet the requirements of the health law and those who switched for other reasons) are one group that is more likely to feel they have been negatively affected by the law. However, in spite of reports last year about some people having plans cancelled and facing higher premiums, the survey finds that plan switchers are about as likely to report paying less for their new plan than their old one as to say they are paying more. This is likely due in part to the availability of tax credits for low- and moderate-income people who buy Marketplace coverage.

The survey also provides the first look at the health status of enrollees in ACA-compliant plans, which has implications for whether premiums this year will be adequate to cover the health expenses of enrollees and how much insurers may increase premiums for next year. While the majority of individuals in non-group plans report being in good health, those with ACA-compliant plans – which insurers rate as a single risk pool regardless of whether coverage was purchased on or off the Exchange – are more likely than those with non-compliant plans to report their health as “only fair” or “poor.” This suggests that people in new, ACA-compliant plans are somewhat sicker than those in the non-group market previously, some of whom have been able to retain their non-compliant coverage under transition policies. What this might mean for premiums in the non-group market is still uncertain, however, since many insurers anticipated a sicker-than-average mix of enrollees when they set their premiums for this year.

The survey’s findings about shopping and enrollment also have implications for future enrollment periods. While most of those who enrolled in coverage found it easy to compare plans, many spent significant time on the shopping process and half sought help with enrollment. This survey only looked at the experiences of those who successfully enrolled, and it’s likely that those who attempted to enroll but were unsuccessful encountered more problems with the process.

The non-group market will continue to undergo significant changes as people shift from non-compliant plans and more people enter the market in the years ahead. Though non-group enrollees represent a relatively modest share of the population, their experiences in the market have significant implications for whether the ACA is perceived as a success or not. This survey is the first in a series that the Foundation plans to conduct tracking the views and experiences of this important group.

Survey Methodology

The Kaiser Family Foundation (KFF) Survey of Non-Group Health Insurance Enrollees is the first in a series of surveys examining the views and experiences of people who purchase their own health insurance, either directly from an insurance company or through a state or federal Health Insurance Exchange created by the Affordable Care Act (ACA). The survey was designed and analyzed by researchers at KFF. Social Science Research Solutions (SSRS) collaborated with KFF researchers on sample design and weighting, and supervised the fieldwork.

The survey was conducted by telephone from April 3 through May 11, 2014 among a nationally representative random sample of 742 adults who purchase their own insurance. Computer-assisted telephone interviews conducted by landline (333) and cell phone (409, including 219 who had no landline telephone) were carried out in English and Spanish by SSRS. Respondents were considered eligible for the survey if they met the following criteria:

• Between the ages of 18-64
• Currently covered by health insurance that they purchase themselves
• Not covered by health insurance through an employer, COBRA, Medicare, Medicaid, or the U.S. military or VA
• If purchase insurance from a college or university, the insurance covers health services received both within and outside the university setting
• If a small business owner, the health insurance they purchase is only for themselves and/or their family, and does not cover non-related employees of their business
• If purchase from a trade association, respondent pays the entire premium themselves
• Respondent was able to answer a question about whether insurance was purchased directly from an insurance company, from a state or federal health insurance marketplace, or through a health insurance agent or broker (Q35 in questionnaire)

Because the study targeted a low-incidence population, the sample was designed to increase efficiency in reaching this group, and consisted of three parts: (1) respondents reached through RDD landline and cell phone dialing to previously uncalled (“fresh”) sample (N=179); (2) respondents reached by re-contacting those who indicated in a previous RDD survey that they either purchased their own insurance or were uninsured (N=186); (3) respondents reached as part of the SSRS Omnibus survey (N=377), a weekly, nationally representative RDD landline and cell phone survey. All RDD landline and cell phone samples were generated by Marketing Systems Group. The “fresh” sample was designed to oversample areas with a lower-income population in order to complete more interviews with respondents who were uninsured prior to the ACA open enrollment period (since being uninsured is negatively correlated with income).

A multi-stage weighting process was applied to ensure an accurate representation of the national population of non-group enrollees ages 18-64. The first stage of weighting involved corrections for sample design, including accounting for the low-income oversample used in the “fresh” sample, the likelihood of non-response for the re-contact sample, number of eligible household members for those reached via landline, and a correction to account for the fact that respondents with both a landline and cell phone have a higher probability of selection. In the second weighting stage, demographic adjustments were applied to account for systematic non-response along known population parameters. No reliable administrative data were available for creating demographic weighting parameters for this group, since the most recent Census figures could not account for the changing demographics of non-group insurance enrollees brought about by the ACA this year. Therefore, demographic benchmarks were derived by compiling a sample of all respondents ages 18-64 interviewed on the SSRS Omnibus survey during the field period (N=4,312) and weighting this sample to match the national 18-64 year-old population based on the 2013 U.S. Census Current Population Survey March Supplement parameters for age, gender, education, race/ethnicity, region, population density, marital status, and phone use. This sample was then filtered to include respondents qualifying for the current survey, and the weighted demographics of this group were used as post-stratification weighting parameters for the “fresh” sample (including gender, age, education, race/ethnicity, marital status, income, and population density). A final adjustment was made to the full sample to adjust for previous insurance status (estimated based on the combined “fresh” and omnibus samples), to address the possibility that the criteria used in selecting the prescreened sample could affect the estimates for previous insurance status.

Weighting adjustments had a minor impact on the overall demographic distribution of the sample, with the biggest adjustments being made based on age (this is common in all telephone surveys, as younger respondents are the most difficult to reach and convince to participate). Weighted and unweighted demographics of the final sample are shown in the table below.

All statistical tests of significance account for the effect of weighting. The sample size and margin of sampling error (MOSE) for key subgroups are shown in the table below.

1. Kaiser Health Tracking Poll: May 2014. https://modern.kff.org/health-reform/poll-finding/kaiser-health-tracking-poll-may-2014/ ↩︎
2.  Three percent of non-group enrollees overall are in ACA-compliant plans that were purchased through a broker but were unsure if their plan was purchased through an Exchange or not. These respondents are not included in either the “Exchange” or “Compliant, non-Exchange” groups. ↩︎
3.  Nine percent of non-group enrollees overall are in ACA-compliant plans and either say they were covered by some other type of insurance (including Medicaid) before purchasing their current plan or did not answer the question about previous insurance status. These respondents are not included in any of the breakout groups of ACA-compliant plans by prior insurance status. ↩︎
4. DHHS Office of the Assistant Secretary for Planning and Evaluation Issue Brief, “Health Insurance Marketplace: Summary Enrollment Report For The Initial Annual Open Enrollment Period,” May 1, 2014. http://aspe.hhs.gov/health/reports/2014/MarketPlaceEnrollment/Apr2014/ib_2014Apr_enrollment.pdf ↩︎
5. Kaiser Health Tracking Poll: May 2014. https://modern.kff.org/health-reform/poll-finding/kaiser-health-tracking-poll-may-2014/ ↩︎
6. Kaiser Health Tracking Poll: May 2014. https://modern.kff.org/health-reform/poll-finding/kaiser-health-tracking-poll-may-2014/ ↩︎
7. Among those in Marketplace plans who report a metal level, the distribution of self-reported responses in the survey looks somewhat different from administrative data released by the Department of Health and Human Services (http://aspe.hhs.gov/health/reports/2014/MarketPlaceEnrollment/Apr2014/ib_2014Apr_enrollment.pdf). Silver is the most common metal tier in both data sources, but the survey finds a somewhat lower share reporting Silver plans (48 percent versus 65 percent) and a somewhat higher share reporting Bronze plans (30 percent versus 20 percent) compared with HHS. Differences between self-reported data from surveys and administrative data are not uncommon, particularly when it comes to a complicated topic like details about one’s health insurance plan. ↩︎
8. DHHS Office of the Assistant Secretary for Planning and Evaluation Issue Brief, “Health Insurance Marketplace: Summary Enrollment Report For The Initial Annual Open Enrollment Period,” May 1, 2014. http://aspe.hhs.gov/health/reports/2014/MarketPlaceEnrollment/Apr2014/ib_2014Apr_enrollment.pdf ↩︎
9. Since this is a survey of people who are enrolled in health plans, it only includes those who successfully completed the enrollment process and may not fully represent the ease or difficulty of the process for all those who tried to enroll. ↩︎
10. Kaiser Health Tracking Poll: May 2014. https://modern.kff.org/health-reform/poll-finding/kaiser-health-tracking-poll-may-2014/ ↩︎

June 2014 marks the 15^th anniversary of the United States Supreme Court’s landmark civil rights decision in Olmstead v. L.C., finding that the unjustified institutionalization of people with disabilities is illegal discrimination. While many cases are resolved without involving the courts, during the last 15 years, the lower courts have had the opportunity to apply Olmstead in a number of contexts, resulting in decisions furthering community integration for people with disabilities. This issue brief examines the legacy of Olmstead, with an emphasis on legal case developments and policy trends emerging in the last five years and the related contributions of the Medicaid program. Medicaid is important because of its unique role in financing the home and community-based services (HCBS) that enable individuals in institutions to return to the community and those at risk of institutionalization to remain in the community with support.

Themes emerging from recent Olmstead cases highlight Medicaid’s role in

• providing community-based services instead of institutionalization;
• providing services in the most integrated setting to enable people with disabilities to interact with non-disabled peers to the fullest extent possible;
• providing community-based services to prevent institutionalization for people at risk;
• replacing sheltered workshops with supported employment; and
• eliminating disability-based discrimination within the Medicaid program.

States continue to make significant progress in reducing the amount spent on institutional services relative to HCBS, with Medicaid continuing to offer the means to facilitate solutions that implement the Americans with Disabilities Act’s (ADA) integration mandate.  This brief is not a review of state progress, but rather an examination of the role of the Court’s Olmstead decision and its subsequent legal enforcement in providing a vehicle for people with disabilities to gain access to services to enable them to live in the community. The on-going work of states, together with the U.S. Department of Justice, the Centers for Medicare and Medicaid Services, people with disabilities, and others, along with the important support offered by the Medicaid program can continue to strengthen the ADA’s promise of community integration for people with disabilities.

June 2014 marks the 15^th anniversary of the United States Supreme Court’s landmark civil rights decision in Olmstead v. L.C., finding that the unjustified institutionalization of people with disabilities is illegal discrimination.¹   Although the Olmstead ruling is based on states’ obligations under the Americans with Disabilities Act (ADA), the Medicaid program plays a key role in making the ADA’s community integration mandate a reality. This is because Medicaid is the major source of financing for the long-term services and supports (LTSS) on which people with disabilities rely to live independently and safely in the community.

While many cases are resolved without involving the courts, during the last 15 years, the lower courts have had the opportunity to apply the Supreme Court’s Olmstead holding in a number of contexts, resulting in decisions furthering the implementation of the ADA’s community integration mandate.  While some cases are brought by individual plaintiffs, the United States Department of Justice (DOJ) also plays an active role in enforcing Olmstead.  This issue brief examines the legacy of Olmstead, with an emphasis on legal case developments and policy trends emerging in the last five years, and highlights the important contributions of the Medicaid program to furthering and facilitating community integration for people with disabilities.²   This brief is not a review of state progress, but rather an examination of the role of the Court’s Olmstead decision and its enforcement in providing a legal vehicle for individuals in institutions, and those at risk of institutionalization, to gain access to services to enable them to live in the community.

The Olmstead Case

The Plaintiffs

The Olmstead case was brought by Lois Curtis and Elaine Wilson, two women with cognitive and mental health disabilities who were institutionalized in Georgia.³   Ms. Curtis had first been institutionalized at age 13.⁴   In 1992, she was again admitted for inpatient psychiatric treatment.  Although her treatment team determined in 1993 that her needs could be met in the community, she remained institutionalized and was not discharged to a community-based treatment program until 1996.⁵   Similarly, Ms. Wilson was admitted to an inpatient psychiatric unit in 1995.  At one point, the hospital proposed discharging her to a homeless shelter, which she successfully challenged.  In 1996, Ms. Wilson’s treating doctor determined that she could be served in the community, but she was not discharged from the institution until 1997.⁶   Both women sued, arguing that the state’s failure to provide community-based services, as recommended by their treating professionals, violated the ADA.  While both women were receiving community-based treatment services when the Supreme Court heard their case, the Court recognized that the nature of their disabilities and their treatment history made it likely that they would again experience institutionalization.⁷ 

The ADA’s Community Integration Mandate

In Olmstead, the SupremeCourt noted that Congress enacted the ADA to counteract the historical isolation and segregation of people with disabilities.  To address this “serious and pervasive social problem,” the ADA “provide[s] a clear and comprehensive national mandate for the elimination of discrimination against individuals with disabilities.”⁸   Olmstead involves Title II of the ADA, which prohibits disability-based discrimination by state and local governments.  Specifically, Title II provides that people with disabilities may not be excluded from participating in, or denied the benefits of, governmental services, programs, or activities.⁹ 

The ADA’s implementing regulations contain its community integration mandate, which requires state and local governments to “administer services, programs, and activities in the most integrated setting appropriate” to the needs of people with disabilities.¹⁰   The preamble to the regulations explains that such a setting “enables individuals with disabilities to interact with non-disabled persons to the fullest extent possible.”¹¹   The regulations also require state and local governments to make reasonable modifications to policies, practices, and procedures to avoid disability-based discrimination, unless such modifications would fundamentally alter the nature of the service, program or activity.¹²   These concepts – most integrated setting, reasonable modification, and fundamental alternation – are the fundamental elements used to analyze an Olmstead claim.

The Court’s Decision

In Olmstead, the Supreme Court considered whether people with disabilities must receive services in the community rather than in institutions.  Writing for the majority, Justice Ginsburg answered this question with “a qualified yes.”¹³   The Court found that community-based services must be offered if appropriate, if a person with a disability does not oppose moving from an institution to the community, and if the community placement can be reasonably accommodated, considering the state’s resources and the needs of other people with disabilities.¹⁴   Although Olmstead involved plaintiffs with mental disabilities, subsequent guidance confirms that its principles apply to people with all types of disabilities.¹⁵ 

The Olmstead Court concluded that the “[u]justified institutional isolation of persons with disabilities is a form of discrimination.”¹⁶   The Court based its conclusion on two judgments made by Congress in enacting the ADA.  First, Congress recognized that the “institutional placement of persons who can handle and benefit from community settings perpetuates unwarranted assumptions that persons so isolated are incapable or unworthy of participating in community life.”¹⁷   Second, Congress found that “confinement in an institution severely diminishes the everyday life activities of individuals, including family relations, social contacts, work options, economic independence, educational advancement, and cultural enrichment.”¹⁸   In enacting the ADA, Congress sought to eliminate disability-based discrimination and promote the integration of people with disabilities in the community.

The Olmstead Court also suggested a standard to determine whether state governments are avoiding disability-based discrimination and complying with the ADA’s community integration mandate.  Specifically, the Court observed that if a state “demonstrat[ed] that it had a comprehensive, effectively working plan for placing qualified persons with mental disabilities in less restrictive settings, and a waiting list that moved at a reasonable pace not controlled by the State’s endeavors to keep its institutions fully populated, the reasonable modifications standard would be met.”¹⁹ 

The Intersection of Medicaid and Olmstead

The Olmstead decision focused on the setting in which people with disabilities receive health care and related services.  The illegal discrimination in Olmstead arose because “[i]n order to receive needed medical services, persons with mental disabilities must, because of those disabilities, relinquish participation in community life they could enjoy given reasonable accommodations, while persons without mental disabilities can receive the medical services they need without similar sacrifice.”²⁰   While Olmstead does not change or interpret federal Medicaid law, the Medicaid program plays a key role in community integration as the major payer for long-term services and supports (LTSS), including the home and community-based services (HCBS) on which people with disabilities rely to live independently in the community (Figure 1).  In 2010, nearly 3.2 million people received Medicaid HCBS, with expenditures totaling $52.7 billion.²¹ 

Historically, however, the Medicaid program has had a structural bias toward institutional care because state Medicaid programs must cover nursing facility services, whereas most HCBS are provided at state option.²²  While states can choose to offer HCBS as Medicaid state plan benefits, the majority of HCBS are provided through waivers.²³   Unlike Medicaid state plan benefits, which must be available to all beneficiaries as medically necessary, waiver enrollment can be capped, resulting in waiting lists when the number of people seeking services exceeds the amount of available funding.   In 2012, nearly 524,000 people were on HCBS wavier waiting lists nationally, with the average waiting time exceeding two years; waiting lists vary both across states and within states among waiver target populations.²⁴ 

Over the last several decades, states have been working to rebalance their long-term care systems by devoting a greater proportion of spending to HCBS instead of institutional care.  These efforts are driven by beneficiary preferences for HCBS, the increased population of seniors and people with disabilities who need HCBS, and the fact that HCBS typically are less expensive than comparable institutional care.  In the last 15 years, the Olmstead decision has brought increased focus to state efforts in this area.  While the majority of Medicaid LTSS spending still goes toward institutional care, the proportion of Medicaid LTSS spending on HCBS continues to increase relative to spending on institutional services.  In FY 2011, HCBS accounted for 45 percent of total Medicaid LTSS spending nationally, up from 32 percent in FY 2002 (Figure 2).

Olmstead Implementation and Enforcement

There have been a number of developments in Olmstead implementation in the last five years, with Medicaid continuing to play a primary role in facilitating and advancing community integration for people with disabilities.  In June 2009, President Obama announced the “Year of Community Living” in recognition of the 10^th anniversary of the Olmstead decision and the work remaining to be done to eliminate disability-based discrimination.  The President’s initiative included over $140 million in funding for independent living centers and new coordination between the Departments of Health and Human Services and Housing and Urban Development to support and promote opportunities for community integration, including increased access to community-based housing through federal housing subsidies.²⁵ 

At the same time, pursuant to the President’s directive, the U.S. Department of Justice (DOJ) initiated what it describes as an “aggressive effort to enforce” Olmstead and the ADA’s community integration mandate across the country.²⁶   From 2009 to 2012, DOJ’s Civil Rights Division was involved in more than 40 Olmstead cases in 25 states,²⁷  and DOJ’s Olmstead enforcement efforts continue today.  DOJ’s Olmstead work takes several forms.  It may file a “statement of interest” in an existing lawsuit in which the federal government is not a party but wishes to provide information about the ADA’s legal requirements to the court.  DOJ also investigates allegations of Olmstead violations, which can result in a letter of findings and a settlement agreement.  DOJ also may initiate litigation to enforce the ADA’s community integration mandate or seek to intervene in an existing case.²⁸   In 2011, DOJ issued a technical assistance guide explaining the rights of people with disabilities and the obligations of state and local governments under the ADA’s community integration mandate.²⁹ 

The ADA’s community integration mandate also can be enforced by individuals with disabilities, as the Olmstead plaintiffs did with the assistance of legal aid attorneys.  Cases can be resolved by negotiating with the state or local governmental entity, without resorting to litigation.  Individuals may file an administrative complaint with the Department of Justice or with the Health and Human Services Office for Civil Rights (OCR), which is responsible for enforcing state and local government compliance with Olmstead.  From August 1, 1999 through September 30, 2010, OCR resolved 850 Olmstead complaints (32 percent after intake and review, 42 percent with corrective action, and 26 percent with no civil rights violations found) and conducted 581 Olmstead investigations, 61 percent of which resulted in corrective action.³⁰   If necessary, individuals also may file a lawsuit seeking relief under the ADA.

Medicaid’s Role in Key Olmstead Implementation Issues

Recent Olmstead cases center around a number of major themes, described below.  The cases included are meant to be illustrative and are not an exhaustive list of all Olmstead litigation.³¹   In each area, Medicaid plays a key role in advancing community integration, as explained below and illustrated by the following short profiles of Medicaid beneficiaries receiving services to support independent living in their communities.  While the profiles are not drawn from formal Olmstead cases, they are examples of seniors and younger people with disabilities who benefit from the legacy of Olmstead.

Providing Community Services Instead of Institutionalization

Olmstead cases continue to involve claims similar to those of Lois Curtis and Elaine Wilson, in which people with disabilities seek access to services in the community rather than in institutions.  Recent Olmstead cases have involved people with mental illness, intellectual and developmental disabilities, and physical disabilities who are institutionalized.

Court Case Examples

• In 2014, a federal court approved a settlement on behalf of a class of thousands of people with mental illness living in a state-operated psychiatric hospital and nursing facility in New Hampshire.  Under the settlement terms, the state agreed to provide expanded community mental health, mobile crisis, and supported employment services and additional scattered site supported housing units.³²   DOJ investigated and then intervened in support of the plaintiffs in this case.
• In 2013, an interim settlement agreement was reached on behalf of over 600 people with developmental disabilities living in nursing facilities in Texas. The settlement terms include expanded home and community-based waiver services, person-centered service and transition plans, and an assessment of nursing facility residents to identify those with developmental disabilities.  DOJ filed a statement of interest and then intervened in the case on behalf of the plaintiffs.³³ 
• In 2013, DOJ filed a lawsuit in Florida, alleging that children with significant medical needs are unnecessarily institutionalized in nursing facilities when they could be served in the community.  The case is currently pending.³⁴ 
• In 2011, DOJ filed a lawsuit and simultaneous settlement agreement in Delaware on behalf of adults in the state psychiatric hospital.  The settlement terms involve the state’s provision of intensive community-based treatment and crisis services, supported employment services, and subsidized housing vouchers to facilitate community transitions.  Implementation of the settlement is overseen by an independent court monitor.³⁵ 

Medicaid’s Role in Deinstitutionalization

Medicaid plays a notable role in deinstitutionalization cases because, as noted above, it is the major source of financing for LTSS, including the HCBS that support people with disabilities in independent community living (Figure 1).  In addition to long-standing Medicaid HCBS authorities, such as home health services, personal care services, and § 1915(c) waiver services, Congress created the Money Follows the Person (MFP) demonstration grant program, which provides enhanced federal funding for Medicaid services for beneficiaries who transition from institutions to the community.³⁶   The Affordable Care Act (ACA) extended MFP and also establishes two new Medicaid authorities, Community First Choice attendant services and supports and the Balancing Incentive Program, both of which offer states enhanced federal funding and new options to expand HCBS as they continue efforts to transition people with disabilities from institutional to community-based settings.³⁷ 

Medicaid Supports Senior’s Move from Nursing Facility to Community Housing

Wanda, age 78

Tulsa, Oklahoma

Wanda was raised in California during the Great Depression and later moved to Oklahoma, where she helped to run her family’s farm.  She worked past age 65, but had to retire when she needed hip surgery.  Wanda also has degenerative joint disease in her lower back and poor circulation in her lower legs and takes thyroid and blood pressure medications.

Wanda spent nearly two years in a nursing facility after her hip surgery, but Medicaid HCBS made it possible for her to move to a senior living community, where she has resided for more than four years.  Medicaid provides the key supports she needs to live at home, including a case manager who coordinates her services, an in-home aide who visits four times a week, home-delivered groceries, and transportation for medical appointments.  Wanda says that she enjoys living in a real “community” and is grateful that Medicaid has made it possible for her to live on her own.

Providing Services in the Most Integrated Setting

In addition to deinstitutionalization, some recent Olmstead cases focus more specifically on the type of community setting in which people with disabilities receive services.  These cases emphasize the ADA’s requirement that people with disabilities receive services in the most integrated setting, which “enables individuals with disabilities to interact with non-disabled peers to the fullest extent possible.”³⁸ 

Court Case Examples

• In 2013, DOJ reached a settlement in a New York case on behalf of people with mental illness seeking scattered-site supportive housing in apartments instead of large adult care homes with over 120 residents.  The settlement requires that within five years, the state will assess current adult care home residents and transition them to supported housing if appropriate and also provide supported employment and community mental health services, such as care coordination, psychiatric rehabilitation, assistance with medications, home health and personal assistance services, assertive community treatment, and crisis stabilization.  The terms of the settlement presume that supported housing is the most appropriate setting for beneficiaries, unless certain exceptions are met.³⁹ 
• In 2010, a settlement agreement was reached between DOJ and North Carolina, which expands access to community-based supportive housing for thousands of adults with mental illness living in large adult care homes.  The settlement requires the provision of community-based mental health treatment and crisis services and supportive employment services for beneficiaries living in their own apartments.⁴⁰ 

Medicaid’s Role in Providing Services in the Most Integrated Community Setting

In addition to the long-standing authority to provide home and community-based waiver services, the Medicaid rehabilitative services state plan option also provides states with the flexibility to offer an array of community-based mental health services.  Medicaid finances a larger share of behavioral health spending than all-health spending compared to other payers (Figure 3).  The Affordable Care Act (ACA) expanded the § 1915(i) HCBS state plan option so that states now can provide any HCBS waiver service through state plan authority.  Section 1915(i) allows states to target HCBS to specific populations, such as people with mental illness.⁴¹   The ACA also established a new health homes state plan option, through which states can receive enhanced federal funding for care coordination services for beneficiaries with chronic conditions, including serious and persistent mental illness.⁴² 

Medicaid Enables Man with Developmental Disabilities to Leave a Group Home to Live in His Own Apartment

Don, age 41

Owosso, Michigan

Don was born with developmental disabilities.  After his mother became too ill to continue caring for him, he lived in a series of group homes, where his sister, Mary, who is his legal guardian, observed that “he wasn’t very happy.” About 10 years ago, Mary was able to help Don put together an array of Medicaid services and supports to help him live safely and independently in his own apartment, which increased his autonomy and enabled him to participate more fully in his community.  Don now self-directs his services, which allows him to choose how to allocate his Medicaid dollars among the approved services that he needs to support his living arrangement.  Don uses most of his service budget to hire his own caregivers because having caregivers whom he trusts has greatly improved his quality of life.

Preventing Institutionalization for People at Risk

Another theme in recent Olmstead cases is the application of the ADA’s community integration mandate to people with disabilities who are at risk of institutionalization due to a lack of community-based services.

Court Case Examples

• In 2013, the 4^th Circuit Court of Appeals ruled that a change in eligibility rules that established more restrictive criteria to qualify for Medicaid personal care services in a beneficiary’s own home than in an adult care home created a significant risk of institutionalization.  North Carolina was requiring beneficiaries to have a limitation in one out of seven activities of daily living to receive services in an adult care home but two out of five activities of daily living to qualify for services in their own home.⁴³ 
• In 2012, a case challenging Louisiana’s reduction of the maximum number of personal care services per week that beneficiaries could receive was settled, with the state agreeing to increase its number of Medicaid HCBS waiver slots to expand capacity.  DOJ filed a statement of interest supporting the beneficiaries’ claim that the reduction in service hours placed them at risk of institutionalization in violation of Olmstead.⁴⁴   DOJ filed a statement of interest in support of the beneficiaries.
• In another 2012 case involving personal care services, the 9^th Circuit Court of Appeals held that across-the-board service reductions could place over 45,000 children with mental illness at serious risk of institutionalization in Washington.  The settlement agreement provides for intensive wrap-around services, including care coordination, mobile crisis, and community-based treatment, as well as a process to identify at-risk children.⁴⁵   DOJ filed a statement of interest on behalf of the beneficiaries.
• In 2011, a federal court in Missouri ruled that Medicaid beneficiaries were at risk of institutionalization as a result of the state’s decision to cover adult diapers as medical supplies for people in institutions but not in the community.  DOJ filed a statement of interest supporting the beneficiaries.⁴⁶ 

Medicaid’s Role in Providing Services for People at Risk of Institutionalization

Section 1915(i) is unique among the Medicaid HCBS authorities in that it allows states to provide HCBS as a preventive measure for people who do not yet require an institutional level of care.  Established by the Deficit Reduction Act of 2005, and expanded by the ACA, § 1915(i) permits states to offer HCBS as Medicaid state plan services and requires that beneficiaries meet functional needs-based eligibility criteria that are less stringent than the state’s criteria to qualify for an institutional level of care.⁴⁷   In addition to the other Medicaid authorities that enable states to provide HCBS to beneficiaries who would otherwise require an institutional level of care, § 1915(i) allows states to provide services proactively to maintain beneficiaries in the community and prevent the need for more costly future services if their medical conditions deteriorated.

Medicaid Provides In-Home Supports That Allow Senior to Avoid Institutionalization

Mary, age 79

Winston-Salem, North Carolina

Mary lives alone in a subsidized apartment building for senior citizens.  She has diabetes, atrial fibrillation, chronic obstructive pulmonary disease, and a history of congestive heart failure and breast cancer.  She takes multiple medications and uses oxygen at night and sometimes during the day when she “tries to do too much.”  Medicaid provides certified nursing assistant services to help Mary with bathing and dressing, and she is about to start receiving additional Medicaid home and community-based waiver services which she hopes will help with tasks like grocery shopping and cleaning because she can no longer do any heavy work or lifting.  She also has difficulty reaching up to get a can down from the top shelf in her kitchen and sometimes needs help making her bed and preparing a meal if she is not feeling well.  Mary receives Social Security benefits and food stamps and does not have any extra money to pay for the help she needs after she covers her rent, utilities, and food.  She does not want to live in an assisted living or nursing facility and says that receiving Medicaid services will “make a whole lot of difference” in her life.

Replacing Sheltered Workshops with Supported Employment

Another emerging theme among recent Olmstead cases involves greater integration for people with disabilities in community-based employment instead of in segregated settings.

Court Case Examples

• In 2014, DOJ entered into a settlement agreement with Rhode Island on behalf of over 3,000 people with developmental disabilities to resolve DOJ’s findings that the state over-relied on segregated settings such as sheltered workshops at the expense of integrated settings such as supported employment.⁴⁸ 
• In 2012, DOJ intervened in an Oregon case in which beneficiaries with developmental disabilities alleged that the state failed to provide them with supported employment services in an integrated setting.  At the time, 61 percent of people with developmental disabilities were employed in sheltered workshops, while only 16 percent received supported employment services in the community.⁴⁹ 

Medicaid’s Role in Supporting Working People with Disabilities

The Medicaid authorities to provide rehabilitative services and home and community-based services are an important source of supports for working people with disabilities.  States elect to provide a range of community behavioral health services under the rehabilitative services option, such as peer support and counseling, basic life and social skills training, community residential services, and supported employment, among others.⁵⁰   In addition, states can offer HCBS, such as homemaker, home health aide, personal care, and habilitation, through § 1915(c) and/or § 1915(i) to help people with disabilities accomplish the activities of daily living necessary to get ready for the work day.   States also can use these authorities to offer supported employment services.

Medicaid Provides Necessary Supports to Enable Man with Disabilities to Work in the Community

Mark, age 43

Nashville, Tennessee

Mark has worked as a grocery store courtesy clerk for 12 years and enjoys having a “real job” outside of a sheltered workshop.  He has autism and intellectual disabilities.  He is very rigid about his daily schedule and will not deviate from his routine.  He bathes and dresses himself but needs help with shaving because he will not look into a mirror.  When he first started at the grocery store, he received job coaching services, but he has since mastered his work tasks and no longer requires regular on-the-job supports.  In addition to his wages, his job provides him with the opportunity for social interaction in the community.

Mark has long been on a Medicaid HCBS waiver waiting list for a community-based residential placement.  He has lived with his parents for his entire life, but it is becoming increasingly difficult for his parents to provide his care now that they are getting older and developing their own health issues.  Mark’s mother would like him to live in a small group home and to move while she is able to assist with his adjustment during the transition.  Receiving Medicaid waiver services for a community-based residential placement would support Mark’s continued employment and provide peace of mind for his aging parents.

Eliminating Disability-Based Discrimination within the Medicaid Program

Another theme emerging from Olmstead cases involves modifying Medicaid rules, such as service hour and/or cost caps, to reasonably accommodate the needs of people with significant disabilities pursuant to the ADA.

Court Case Examples

• In 2010, a Texas federal court ruled that the state Medicaid program’s cost cap on nursing services should be modified to prevent the institutionalization of a man with multiple disabilities.  Under Medicaid’s Early, Periodic, Screening, Diagnosis and Treatment (EPSDT) benefit for people up to age 21, this man had received 18 to 20 hours of nursing services per day.  However, when he aged out of EPSDT, the state applied a cost cap to nursing services for adults that prevented him from receiving enough services to remain in the community.⁵¹ 
• In 2004, the 7^th Circuit Court of Appeals held that the ADA required Illinois to waive its cap on private duty nursing hours for adults.  In that case, the Medicaid beneficiary seeking services had received 16 hours per day under EPSDT, but qualified for only 5 hours per day as an adult, which was insufficient for him to remain safely at home.  The court applied Olmstead and concluded that waiving the service hour cap would not fundamentally alter the state’s Medicaid program because so few people had such extensive care needs.  The court also noted that providing HCBS was less expensive than comparable institutional care.⁵² 

Medicaid’s Role in Eliminating Disability-Based Discrimination

Cases that grant reasonable modifications to Medicaid policies that would otherwise result in the institutionalization of beneficiaries underscore the fact that states’ obligations to people with disabilities under the ADA are independent of the requirements that states must meet under the Medicaid program.  CMS notes that states must administer their Medicaid programs in a way that does not discriminate against people with disabilities in keeping with the ADA.  In addition to typically being less expensive and in line with beneficiary preferences, providing community-based services enables states to meet their ADA obligations.

Developing Issues in Olmstead Implementation

While advancements such as those described above have been made, work remains to be done to achieve full community integration for people with disabilities.  In these areas, Medicaid continues to offer the means to facilitate solutions that implement the ADA’s integration mandate.  Issues to watch as Olmstead implementation proceeds include:

• Whether LTSS spending is rebalanced toward HBCS in a way that affords the opportunity for community integration for people with disabilities.  A 2013 U.S. Senate Committee report notes that increased HCBS access for people with developmental disabilities has outpaced that for seniors and people with physical disabilities, and according to CMS, over 200,000 people remaining in nursing facilities in 2012, or nearly 16 percent, are under age 65.⁵³   Through initiatives such as the Balancing Incentive Program, CMS and states are working to develop and expand no wrong door/single entry point systems and core standardized assessments to achieve greater equity among different populations receiving Medicaid HCBS.
• Whether states’ Olmstead plans contribute to continued progress toward community integration.  While the Supreme Court suggested that states can use such plans as tools to comply with their ADA obligations, the 2013 Senate Committee report notes that these “planning efforts vary considerably, ranging from simple lists of recommendations to more comprehensive action plans” with many “lack[ing] detailed enforceable benchmarks.”⁵⁴   The new and expanded Medicaid authorities to provide HCBS, such as MFP, Community First Choice, § 1915(i), and the Balancing Incentive Program, afford states additional options and flexibility to rebalance their LTSS spending which could be incorporated into state Olmstead plans.  Exploring ways to streamline the various Medicaid HCBS authorities may facilitate state adoption and expansion of HCBS.
• Whether community-based settings provide the fullest extent of integration possible for people with disabilities, consistent with the ADA.  The 2013 U.S. Senate Committee report notes that states are making progress in increasing the number of people receiving HCBS and the amount spent on HCBS, but are not always providing services to people “in their own homes,” even though this is the most integrated setting for virtually all beneficiaries.⁵⁵   CMS’s recent finalization of regulations that define a “home and community-based setting” for services across Medicaid HCBS authorities presents an opportunity for states, beneficiaries, providers, and other stakeholders to focus on this aspect of community integration.⁵⁶ 
• How Olmstead’s principles are integrated into care delivery system reforms.  States are increasingly interested in delivery system reforms, such as moving to capitated or managed fee-for-service managed care models, within their Medicaid programs and/or as a way of integrating and coordinating Medicare and Medicaid services for dually eligible beneficiaries.  These initiatives are increasingly encompassing people with disabilities and LTSS.  CMS’s 2013 guidance specifies that states implementing Medicaid managed LTSS must administer these programs consistent with Olmstead and the ADA’s community integration mandate.⁵⁷   While these models offer the opportunity for increased access to HCBS, they also could involve potential risks of disrupting established services for the most vulnerable beneficiaries.

The Supreme Court’s Olmstead decision has spurred progress toward community integration for people with disabilities, and the Medicaid program plays a key role in Olmstead implementation. Key trends in recent years include a continuing emphasis on deinstitutionalization, as well as efforts to provide services in the most integrated community setting, prevent institutionalization for beneficiaries at risk, increase opportunities for supported employment in the community, and eliminate disability-based discrimination that would otherwise prevent people with disabilities from participating in the community to the greatest extent possible. The benefits of Olmstead in all of these areas are illustrated by the cases described in this brief. Olmstead also impacted the life of plaintiff Lois Curtis, who in the last 15 years has lived in group homes and subsequently rented a house with a roommate where she self-directs her Medicaid home and community-based waiver services. She works as an artist and has presented one of her paintings to President Obama.⁵⁸   The on-going work of states, together with DOJ, CMS, people with disabilities, and others, along with the important support offered by the Medicaid program can continue to strengthen the ADA’s promise of community integration for people with disabilities.

1. 527 U.S. 581 (1999), available at http://www.law.cornell.edu/supct/html/98-536.ZS.html. ↩︎
2. For previous discussions of Olmstead and Medicaid, see Kaiser Commission on Medicaid and the Uninsured, Olmstead v. L.C.:  The Interaction of the Americans with Disabilities Act and Medicaid (June 2004), available at https://modern.kff.org/medicaid/event/olmstead-v-l-c-the-interaction-of/; Kaiser Commission on Medicaid and the Uninsured, Olmstead at Five:  Assessing the Impact (June 2004), available at https://modern.kff.org/medicaid/report/olmstead-at-five-assessing-the-impact/; Kaiser Commission on Medicaid and the Uninsured, The Olmstead Decision:  Implications for Medicaid (March 2000), available at https://modern.kff.org/medicaid/issue-brief/the-olmstead-decision-implications-for-medicaid/. ↩︎
3. A video interview with the Olmstead plaintiffs is available at Kaiser Commission on Medicaid and the Uninsured, Olmstead:  “I Did It” (June 2004), https://modern.kff.org/medicaid/video/olmstead-i-did-it/. ↩︎
4. The White House, Office of Public Engagement, Olmstead Champion Meets the President (June 22, 2011), available at http://www.whitehouse.gov/blog/2011/06/22/olmstead-champion-meets-president. ↩︎
5. 527 U.S. 581, slip opin. at 7. ↩︎
6. Id. at 7-8. ↩︎
7. Id. at 8, n.6. ↩︎
8. Id. at 3 (citing 42 U.S.C. §§ 12101(a)(2), (b)(1)). ↩︎
9. Id.at 4 (citing 42 U.S.C. § 12132). ↩︎
10. Id. at 6 (citing 28 C.F.R. § 35.130(d)). ↩︎
11. Id. (citing 28 C.F.R. Pt. 35, App. A, p. 450). ↩︎
12. Id. at 6-7 (citing 28 C.F.R. § 35.130(b)(7)). ↩︎
13. Id. at 1. ↩︎
14. Id. ↩︎
15. See, e.g., State Medicaid Director Letter from Timothy M. Westmoreland, Director, Center for Medicaid and State Operations, Health Care Financing Administration and Thomas Perez, Director, Office for Civil Rights (Jan. 14, 2000), available at http://downloads.cms.gov/cmsgov/archived-downloads/SMDL/downloads/smd011400c.pdf.  The ADA applies to people with a “physical or mental impairment that substantially limits one or more [specified] major life activities” or who have a “record of such an impairment” or who are “regarded as having such an impairment.”  42 U.S.C. § 12102(2). ↩︎
16. Id. at 15. ↩︎
17. Id. ↩︎
18. Id. ↩︎
19. Id. at 21. ↩︎
20. 527 U.S. 581, slip opin. at 16. ↩︎
21. Kaiser Commission on Medicaid and the Uninsured, Medicaid Home and Community-Based Services Programs:  2010 Data Update (March, 2014), available at https://modern.kff.org/medicaid/report/medicaid-home-and-community-based-service-programs/.  These figures reflect enrollment and expenditures for Medicaid state plan home health and personal care services and § 1915(c) waivers.  States also may provide Medicaid HCBS through § 1115 waivers, the Balancing Incentive Program, the Community First Choice state plan option, and § 1915(i). ↩︎
22. For more information, see Kaiser Commission on Medicaid and the Uninsured, Medicaid Long-Term Services and Supports:  An Overview of Funding Authorities (Sept. 2013), available at https://modern.kff.org/medicaid/fact-sheet/medicaid-long-term-services-and-supports-an-overview-of-funding-authorities/. ↩︎
23. Kaiser Commission on Medicaid and the Uninsured, Medicaid Home and Community-Based Services Programs:  2010 Data Update (March, 2014), available at https://modern.kff.org/medicaid/report/medicaid-home-and-community-based-service-programs/. ↩︎
24. Id. ↩︎
25. The White House, Office of the Press Secretary, President Obama Commemorates Anniversary of Olmstead and Announces New Initiatives to Assist Americans with Disabilities (June 22, 2009), available at http://www.whitehouse.gov/the_press_office/President-Obama-Commemorates-Anniversary-of-Olmstead-and-Announces-New-Initiatives-to-Assist-Americans-with-Disabilities; see also CMS, Center for Medicaid and CHIP Services Informational Bulletin, New Housing Resources to Support Olmstead Implementation (June 18, 2012), available at http://medicaid.gov/Federal-Policy-Guidance/Downloads/CIB-06-18-12.pdf. ↩︎
26. U.S. Dep’t of Justice, Civil Rights Division, ADA.gov, Olmstead:  Community Integration for Everyone, available at http://www.ada.gov/olmstead/index.htm. ↩︎
27. Testimony of Thomas E. Perez, Assistant Attorney General, Civil Rights Division, DOJ before the Senate Committee on Health, Education, Labor and Pensions, Olmstead Enforcement Update:  Using the ADA to Promote Community Integration (June 21, 2012), available at http://www.help.senate.gov/imo/media/doc/Perez4.pdf. ↩︎
28. See National Disability Rights Network, Docket of Cases Related to Enforcement of the ADA Title II “Integration Regulation” at 13 (April 11, 2014) (organizing cases in these main categories), available at http://www.ndrn.org/images/Documents/Issues/Community_integration/Docket_of_Cases_Related_to_Enforcement_of_the_ADA_ Title_II_Integration_Regulation_april_2014.pdf. ↩︎
29. U.S. DOJ Office of Civil Rights, Questions and Answers on the ADA’s Integration Mandate and Olmstead Enforcement (June 22, 2011) (citing 28 C.F.R. Pt. 35, App. A), available at http://www.ada.gov/olmstead/q&a_olmstead.htm#_ftnref11. ↩︎
30. U.S. Dep’t of Health and Human Servs., Office for Civil Rights, Serving People with Disabilities in the Most Integrated Setting:  Community Living and Olmstead, Olmstead Enforcement Results available at http://www.hhs.gov/ocr/civilrights/understanding/disability/serviceolmstead/. ↩︎
31. For additional case examples, see U.S. DOJ Civil Rights Division, Olmstead Enforcement, available at http://www.ada.gov/olmstead/olmstead_enforcement.htm; U.S. Dep’t of Health and Human Servs., Olmstead Enforcement Success Stories, available at http://www.hhs.gov/ocr/civilrights/activities/examples/Olmstead/successstoriesolmstead.html; National Disability Rights Network, Docket of Cases Related to Enforcement of the ADA Title II “Integration Regulation” (April 11, 2014), available at http://www.ndrn.org/images/Documents/Issues/Community_integration/Docket_of_Cases_Related_to_Enforcement_of_the_ADA_ Title_II_Integration_Regulation_april_2014.pdf; University of Michigan Law School Civil Rights Litigation Clearinghouse, available at http://www.clearinghouse.net/results.php?searchSpecialCollection=7; Center for Personal Assistance Services, available at http://www.pascenter.org/state_based_stats/olmstead/index.php. ↩︎
32. Amanda D. v. Hassan; U.S. v. N.H., 1:12-cv-53 (D.N.H. 2012), http://www.ada.gov/olmstead/olmstead_cases_list2.htm#fla; see also NDRN docket at 26-27. ↩︎
33. Steward v. Perry, 5:10-cv-1025 (W.D. Tex. 2010), http://www.ada.gov/olmstead/olmstead_cases_list2.htm#fla; see also NDRN docket at 31-32. ↩︎
34. U.S. v. Florida, 1:13-cv-61576 (S.D. Fla. 2013), http://www.ada.gov/olmstead/olmstead_cases_list2.htm#fla. ↩︎
35. U.S. v. Del., 11-cv-591 (D.Del. 2010), http://www.ada.gov/olmstead/olmstead_cases_list2.htm#fla; see also NDRN docket at 17-18. ↩︎
36. For more information, see Kaiser Commission on Medicaid and the Uninsured, Money Follows the Person:  A 2013 State Survey of Transitions, Services, and Costs (April 2014), available at https://modern.kff.org/report-section/money-follows-the-person-a-2013-state-survey-of-transitions-services-and-costs-introduction/. ↩︎
37. For more information, see Kaiser Commission on Medicaid and the Uninsured, How is the Affordable Care Act Leading to changes in Medicaid Long-Term Services and Supports Today?  State Adoption of Six LTSS Options (April 2013), https://modern.kff.org/medicaid/issue-brief/how-is-the-affordable-care-act-leading-to-changes-in-medicaid-long-term-services-and-supports-ltss-today-state-adoption-of-six-ltss-options/. ↩︎
38. U.S. DOJ Office of Civil Rights, Questions and Answers on the ADA’s Integration Mandate and Olmstead Enforcement at question 1 (June 22, 2011) (citing 28 C.F.R. Pt. 35, App. A), available at http://www.ada.gov/olmstead/q&a_olmstead.htm#_ftnref11. ↩︎
39. U.S. v. N.Y., 13-cv-4165 (E.D.N.Y. 2013), http://www.ada.gov/olmstead/olmstead_cases_list2.htm#fla; see also Disability Advocates v. Paterson, at id; NDRN docket at 41-42. ↩︎
40. U.S. v. N.C., 5:12-cv-557 (E.D.N.C. 2012), http://www.ada.gov/olmstead/olmstead_cases_list2.htm#fla; see also NDRN docket at 4, 43. ↩︎
41. For more information, see Kaiser Commission on Medicaid and the Uninsured, How is the Affordable Care Act Leading to changes in Medicaid Long-Term Services and Supports Today?  State Adoption of Six LTSS Options (April 2013), https://modern.kff.org/medicaid/issue-brief/how-is-the-affordable-care-act-leading-to-changes-in-medicaid-long-term-services-and-supports-ltss-today-state-adoption-of-six-ltss-options/. ↩︎
42. For more information, see id. ↩︎
43. Pashby v. Cansler (D.N.C. 2011), NDRN docket at 58-59. ↩︎
44. Pitts v. Greenstein, 10-cv-635 (M.D.La. 2010), http://www.ada.gov/olmstead/olmstead_cases_list2.htm#fla. ↩︎
45. M.R. v. Dreyfus, 10-cv-2052 (W.D.Wash. 2011); see also NDRN docket at 7, 33. ↩︎
46. Hiltibran v. Levy, 10-cv-4185 (W.D. Mo. 2010), http://www.ada.gov/olmstead/olmstead_cases_list2.htm#fla. ↩︎
47. For more information, see Kaiser Commission on Medicaid and the Uninsured, How is the Affordable Care Act Leading to changes in Medicaid Long-Term Services and Supports Today?  State Adoption of Six LTSS Options (April 2013), https://modern.kff.org/medicaid/issue-brief/how-is-the-affordable-care-act-leading-to-changes-in-medicaid-long-term-services-and-supports-ltss-today-state-adoption-of-six-ltss-options/. ↩︎
48. U.S. v. R.I., 1:14-cv-00175 (D.R.I. 2014), http://www.ada.gov/olmstead/olmstead_cases_list2.htm#fla. ↩︎
49. Lane v. Kitzhaber, 12-cv-00138 (D.Or. 2012), http://www.ada.gov/olmstead/olmstead_cases_list2.htm#fla; see also NDRN docket at 29. ↩︎
50. SAMHSA, Medicaid Handbook:  Interface with Behavioral Health Services at 3-5 (2013), available at http://store.samhsa.gov/shin/content/SMA13-4773/SMA13-4773_Mod1.pdf. ↩︎
51. Sidell v. Maram, (C.D. Ill. 2055), NDRN docket at 71. ↩︎
52. Knowles v. Traylor, 10-10246 (N.D. Tex. 2008; 5th Cir. 2010), NDRN docket at 10, 70. ↩︎
53. Chairman Tom Harkin, U.S. Senate Health, Education, Labor, and Pensions Committee, Separate and Unequal:  States Fail to Fulfill the Community Living Promise of the Americans with Disabilities Act at 18, 44, 46 (July 18, 2013) (citation omitted), available at http://www.harkin.senate.gov/documents/pdf/OlmsteadReport.pdf.  The report is based on a request to states for information about HCBS, to which 31 states provided substantive responses. ↩︎
54. Id. at 60, 61. ↩︎
55. Id. at 65. ↩︎
56. 79 Fed. Reg. 2948-3039 (Jan. 16, 2014), available at http://www.gpo.gov/fdsys/pkg/FR-2014-01-16/pdf/2014-00487.pdf. ↩︎
57. CMS, Guidance to States Using 1115 Demonstrations or 1915(b) Waivers for Managed Long Term Services and Supports Programs (May 20, 2013), available at http://www.medicaid.gov/Medicaid-CHIP-Program-Information/By-Topics/Delivery-Systems/Downloads/1115-and-1915b-MLTSS-guidance.pdf. ↩︎
58. The White House, Office of Public Engagement, Olmstead Champion Meets the President (June 22, 2011), available at http://www.whitehouse.gov/blog/2011/06/22/olmstead-champion-meets-president; see also The Art and Advocacy of Lois Curtis, http://loiscurtisart.com/.   ↩︎