March 01, 2015

The Affordable Care Act and People with Disabilities

Silvia Yee

The significance of the Patient Protection and Affordable Care Act (ACA) for many solo practitioners and attorneys who work in smaller partnerships and practices extends beyond the law’s relevance to clients. The ACA increases insurance options for attorneys without employment insurance and makes affordable insurance a possibility for attorneys with disabilities, chronic conditions, or dependents who have disabilities. Obtaining insurance is not, however, the same as having adequate coverage, and the American health care system remains complex and difficult to navigate even after ACA-initiated reforms. Although the ACA made important changes to public health programs such as Medicare and Medicaid, this article will mostly focus on private health insurance reform and the marketplaces. As with any major legal change, there is some good news and some not-so-good news. Following are some of the major health care reforms and remaining barriers for people with disabilities.

Good News

No refusal for a pre-existing condition. The ACA is a complex piece of legislation. Some changes affect all health insurance companies and plans, some are directed primarily at health insurance offered within the marketplaces, and some components are aimed at public programs such as Medicare and Medicaid. One of the most positive and broadly applied reforms for people with disabilities is the prohibition on health insurance companies’ denying issuance because of a pre-existing condition such as cancer, asthma, or another chronic condition. Insurers also cannot refuse treatment or charge more for treatment under a policy that is issued to a person with a disability. This holds true for health insurance that is sold through a marketplace, insurance products sold outside of a marketplace, employment insurance, and Medicaid and Medicare. The one exception is for individual grandfathered plans (individually purchased plans that existed as of March 23, 2010, and that have not substantially cut their benefits or increased costs since that time).

It would be hard to overstate the difference this single reform makes to the lives of uninsured or underinsured people with disabilities. Even though health insurance companies are not exempt from the Americans with Disabilities Act of 1990 (ADA), people with disabilities have historically been treated differently in the realm of insurance because of the ADA’s “safe harbor” provision that allows certain insurance plans to have terms that treat people with disabilities differently on the basis of “underwriting risks, classifying risks, or administering such risks.” In theory, this provision only allows insurers to make coverage distinctions for people with disabilities when these differences are based on legitimate actuarial evidence. In practice, insurers often refuse insurance or offer only very expensive and inadequate coverage policies to people with a wide range of various disabilities, ranging from developmental disabilities that are present at birth to conditions acquired later in life such as breast cancer or traumatic brain injury. Many of these conditions do not necessarily shorten life span or equate with ill health, and insurers had little or no actuarial evidence to refuse or impose restrictions on health and life insurance.

Children on parents’ insurance until 26 years of age. Another positive change enacted early on by the ACA was one that allowed dependent children (i.e., a child for whom a parent claims a personal exemption tax deduction) under the age of 26 to remain on, or return to, their parents’ or a parent’s health insurance policy. An estimated 4.1 million young people age 15 to 24 have disabilities. An additional 500,000 reach adulthood each year and face losing health coverage. This change helped many families and adult children with disabilities at a critical time in their lives. Transitions commonly occur for students with disabilities after they turn 18 as they graduate from high school, attend or graduate from college, and seek employment and a more independent living situation, which could vary from one’s own apartment to a residential care facility. This provision of the ACA gives families and young adults with disabilities additional time to prepare for and get through these multiple life transitions while preserving critical medical and mental health provider relationships, as well as better coverage for durable medical equipment, assistive technology, and prescriptions than what may be available through student insurance or the employment insurance offered in one’s first few jobs.

Moreover, children with significant disabilities, who may have benefited from a pediatrician’s care coordination and other state Medicaid benefits and services geared specifically toward children with certain developmental disabilities, can face a jarring transition upon reaching adulthood. The switch to adult primary care doctors who frequently have little or no training with regard to disabilities, fewer specialists, and a greatly reduced array and availability of service providers can be very difficult to negotiate. A few extra years to plan and interview future providers can be invaluable.

Essential health benefits. One of the most significant reforms affecting the private insurance market is the requirement that insurance must offer specified categories of “essential health benefits” (EHBs) in order to be certified for the individual and small group marketplaces.

EHBs must include items and services within the following ten categories: ambulatory patient services; emergency services; hospitalization; maternity and newborn care; mental health and substance use disorder services, including behavioral health treatment; prescription drugs; rehabilitative and habilitative services and devices; laboratory services; preventive and wellness services and chronic disease management; and pediatric services, including oral and vision care. States that choose to expand their Medicaid program must also offer the EHB categories to their expansion population, though not to their “traditional” Medicaid populations.

For the general public, the establishment of the EHB categories generally means an end to individual “junk” insurance products that provide wholly inadequate coverage, for example by setting very low daily or annual limits on something as basic as a hospital stay. For people with disabilities, the categories themselves are critical, especially the inclusion of prescription drugs, mental health and substance use disorder services, and rehabilitation and habilitation treatments and devices. Habilitative treatments, services, and devices allow one to acquire, keep, or improve functional abilities, as compared to rehabilitation, which covers the restoration or improvement of functional abilities that have been lost. The distinction is important to someone who has a congenital condition, for example; a young child may be working on gaining and improving communication skills that she has never had before.

While federal law establishes certain parameters for the EHB categories, states have also been given a great deal of flexibility in establishing the details of each category. Each state gets to choose its own “benchmark” plan, which in turn becomes the model plan that defines the EHB coverage that all other plans in a marketplace must offer. For people with disabilities, this flexibility has led to some difficulties. Again, looking at the category of habilitation, state insurers have not even traditionally used the term. The kinds of treatments and products that would fall into the category, ranging from wheelchairs and other durable medical equipment to physical and speech therapy, have usually been subject to a variety of historical controls such as annual caps, visit limits, or “replacement value” limitations (e.g., there is no annual or lifetime limit on a beneficiary’s power wheelchair, but only 50 percent of the replacement chair will be covered). When these limits are imbedded in the plan that a state chooses as its benchmark plan, the limits are theoretically imported into what that state will accept as allowable coverage of an essential health benefit.

It has also been difficult for people with disabilities to get the kind of coverage details needed to make an informed decision among marketplace products. Typically, insurance customer service representatives speak to you after you provide your member number. Marketplace plans are required to make a relatively standardized and easy-to-read “summary of benefits” available, but it will rarely provide the kind of weedy detail that a person with particular disabilities or chronic conditions may need to know about specific drug or therapy coverage, applicable visit limits, durable medical equipment caps, or community-based rehabilitation program coverage. You may find that all your hard-earned abilities as a litigator and skilled negotiator will meet its match when you try to figure out, for example, whether and how a given marketplace plan covers your child’s need for augmentative communication therapies and devices.

Non-discrimination requirements. For anyone whose practice encompasses civil rights actions, Section 1557 of the ACA is highly significant. Section 1557 explicitly adopts and applies existing federal laws that prohibit discrimination on the ground of race, color, national origin, sex, age, or disability under “any health program or activity, any part of which is receiving Federal financial assistance . . . or under any program or activity that is administered by an Executive agency or any entity established under [Title I of the ACA]. . . .” Section 1557 applies to all the health insurance marketplaces created under the ACA, just as Section 504 clearly applies to federally conducted programs and activities such as Medicare and Medicaid. It is worth specifically noting that when the U.S. Department of Health and Human Services (HHS) issued the EHB regulations, it included lesbian, gay, bisexual, and transgender (LGBT) individuals by identifying discrimination on the basis of sex stereotyping and gender identity as a prohibited facet of discrimination on the basis of sex, even though there is no existing federal LGBT civil rights law. The HHS Office for Civil Rights expressly stated in spring 2014 that insurance companies could not discriminate against individuals on the basis of sexual orientation or gender identity, for example by refusing to insure same-sex spouses with respect to spousal coverage, and it stated that it would accept LGBT-based complaints in the health care context.

The Not-So-Good News

The above positive developments each took effect at different times, applied to different forums and types of insurance, and occurred within a complex mix of private and public health insurance that remains structurally unchanged. ACA reforms mean that the threshold problem of being uninsured has been fixed or alleviated for millions of Americans, including people with disabilities. In 2010 as many as 3.5 million adults with disabilities living in their communities had household incomes between 100 percent and 133 percent of the federal poverty level (FPL). A great majority of these individuals did not qualify for Medicaid and were likely uninsured, underinsured, and simply shut out of the private insurance market because of a pre-existing condition. In 2014 many of these adults benefited from their state choosing to participate in the ACA’s Medicaid expansion for people earning up to 133 percent of the FPL. Others who do not qualify for Medicaid expansion have gained insurance through the marketplace and possible eligibility for insurance tax credits. However, the next step of finding and keeping affordable adequate coverage remains immensely complicated.

Few of us live with the assurance of stable jobs and incomes for prolonged periods. Those of us whose income may vacillate near the FPL occasionally or from year to year are already subject to “churning” between expansion Medicaid and marketplace coverage. Individuals with disabilities can be subject to fluctuating income levels because changes in a disability or chronic condition can directly affect one’s employment capacity, and they also are subject to increased complexity because they are potentially eligible for traditional Medicaid coverage, expansion coverage, and marketplace coverage in any given year. Although many states that expanded Medicaid chose to offer the expansion population the same benefit package that was offered through traditional Medicaid in the state, this is not true in every state, and there is no requirement that the benefit packages remain equal in future. Each change of insurance category brings potentially significant changes in coverage, affecting the drugs one can receive, the doctors one can see, the number of treatments one can have, and the out-of-pocket expenses and deductibles to which one is subject.

In addition, we all undergo unplanned major life events: job loss, divorce (which can lead to changes in household size and income), the birth of a child, changes in employment hours, or a move to another state for work or personal reasons. All these events can now trigger changes in insurance eligibility, whether that insurance is sourced in employment, the marketplace, or a public program. People without disabilities experience the same life changes and uncertainties as those with single or multiple disabilities or chronic conditions, but there is a vital difference. The fact of disability intensifies the urgency and daily priority of the need for health insurance. People who don’t have disabilities or dependents with disabilities can think that, as with making a will or starting a retirement fund, they can deal with their health needs “later” when they will have more income or be at a more stable place in their lives. People with disabilities can’t afford that kind of self-delusion, not without potentially paying a very high cost in terms of their health, functional capacity, and independence.

Finally, there are some health care issues that are unique to people with disabilities that the ACA has only just begun to address. First, billions of public and private dollars are spent on health care delivery that remains fundamentally inaccessible. Hospitals, providers, treatment facilities, and managed care operations continue to be rife with structural, physical, and programmatic barriers and fail to provide height-adjustable exam tables, sign language interpreters, documents in alternative formats such as Braille or CD, providers trained to communicate with individuals who have developmental disabilities, and information and record systems that would enable a person with a disability to find and make an appointment with an accessible provider. Although the ACA requires the establishment of access standards for medical diagnostic equipment such as exam tables, scales, and mammography equipment, progress toward the eventual dissemination of legally enforceable standards is slow and will not address the underlying lack of a systemic way to monitor and proactively enforce federal and state accessibility laws in health care delivery.

Second, it remains extremely difficult to convince policy- and lawmakers that people with disabilities are subject to health disparities not because they have inherent poor health but because they do not receive quality effective health care. The ACA took the step of acknowledging disability status as a bona fide marker of a health disparity population. It also includes provisions that require data collection on where people with disabilities get access to health services and where accessible facilities can be found, but these provisions remain unfunded. In practice, many consumer surveys and health care quality measures continue to treat disability as only a health outcome rather than a population characteristic. If people with disabilities cannot be distinctly identified within a population, the quality of care that they receive or fail to receive cannot be accurately determined or compared.

Third, Medicaid remains the single public source of long-term home- and community-based services (HCBS), and it is only available to low- and very-low-income individuals. Health care insurance reform under the ACA has not succeeded in establishing or even encouraging private financing of the services and supports that people with disabilities of all ages need to maintain productive lives in their communities. The American public may be unwilling to “go gentle into that good night,” but we are somehow resigned to living out our final years in nursing homes because we refuse to prepare realistically for the likelihood of needing HCBS as we age. Young people with disabilities and chronic conditions, on the other hand, are not in denial concerning their need for HCBS, but very few have the wherewithal to pay for significant out-of-pocket medical expenses and current personal assistance needs while simultaneously saving for anticipated future health care and HCBS. People with significant disabilities whose income or assets are currently too high to qualify for Medicaid face the unpalatable fact that they can never afford to retire.

Taken together, these remaining deficiencies mean that the American health care system, at its core, remains unprepared to adequately serve our parents, our spouses, ourselves, and our children as we age. Ultimately the call for health care reform that serves the needs of people with disabilities is not a matter of altruism or charity but a matter of self-interest. The ACA initiated some very significant first steps. Let’s finish the job.


As of the time this issue went to press, the U.S. Supreme Court had not yet heard arguments in King v. Burwell that are scheduled for March 4, 2015.The high court granted certiorari November 7, 2014, for the case, which in a nutshell will decide whether the ACA authorized federal tax subsidies in the 34 states that are operating through the federal marketplace instead of establishing an independent state-run marketplace. Further discussion of the ramifications of the Supreme Court’s decision in King is outside the scope and space of this article, but additional information and analysis can be found at

Additional Resources

  • Engaging true stories about the barriers experienced by people with various disabilities when they seek standard and specialized health care, compiled by the Disability Rights Education and Defense Fund (DREDF), are available at
  • Enrollment options for the 2015 enrollment period in the federal marketplace (covering the individual market for 37 states) can be viewed at The 13 state-run marketplaces have their own websites.
  • The Center for Consumer Information and Insurance Oversight (CCIIO) is part of the U.S. Department of Health and Human Services and oversees implementation of those portions of the ACA that relate to private health insurance. Topic-specific fact sheets and Q&As are available at
  • The National Disability Navigator Research Collaborative (NDNRC) provides topical fact sheets and a guide written in lay language intended to support federal marketplace navigators and assisters when giving technical assistance to applicants with disabilities at
  • The Kaiser family foundation provides in-depth policy analysis and information on the ACA, including information on public programs such as Medicare and Medicaid, at

Silvia Yee

Silvia Yee is Senior Staff Attorney for the Disability Rights Education and Defense Fund.