Joan Durocher
Senior Attorney/Advisor
National Council on Disability

Thank you for inviting me to be here today, particularly ABLE and the Health Law Society.  I especially want to thank Emily Munson for the coordination and hard work involved in this lecture.

First, I thought I would tell you a little bit about my background. I’m one of the senior staff attorneys at the National Council on Disability, which is an independent federal agency, composed of 15 members appointed by the President and confirmed by the Senate.  NCD’s purpose is to promote policies and practices that guarantee equal opportunity for all individuals with disabilities, regardless of the nature or severity of the disability, and to empower individuals to achieve economic self-sufficiency, independent living, and integration into all aspects of society.

While it was my own life that made me interested in this field, I have found that it is actually a very creative area of law and policy-making.  In just about any area of life you’ll find a field within disability policy where you can specialize – be it transportation, housing, technology, you name it – even foreign policy.  Which leads me to the main topic I want to cover, and the title of this lecture.

One of the areas I’ve been the most involved with over the last several years has been something called the United Nations Convention on the Rights of Persons with Disabilities (or the CRPD).  How many of you have heard of that?  Well, convention is just another word for treaty – and they can pretty much be used interchangeably.

Well, as the Americans with Disabilities Act was an emancipation proclamation for those of us with disabilities in the United States, the Convention on the Rights of Persons with Disabilities plays that role for the whole world.

Back in 2001, Mexico put forth a proposal in the United Nations General Assembly to establish an Ad Hoc Committee to consider proposals for what they were then calling a comprehensive and integral international convention, or treaty, to promote and protect the rights and dignity of persons with disabilities.  This Ad Hoc Committee then spent the next 5 years drafting the treaty and on December 13, 2006, the Convention on the Rights of Persons with Disabilities and its Optional Protocol was adopted at the United Nations Headquarters in New York, and was opened for signature on March 30, 2007. The Optional Protocol is actually a separate treaty that establishes two procedures aimed at strengthening the implementation and monitoring of the Convention.  The first is an individual communications procedure allowing individuals to bring petitions to the Committee claiming breaches of their rights; the second is an inquiry procedure giving the Committee authority to undertake inquiries of grave or systematic violations of the Convention. On that date, there were 82 signatories to the Convention, 44 signatories to the Optional Protocol, and 1 ratification of the Convention. This is the highest number of signatories in history to a UN treaty on its opening day.  This treaty is also the first comprehensive human rights treaty of the 21st century. This Convention was negotiated during eight sessions of an Ad Hoc Committee of the General Assembly from 2002 to 2006, which also makes it the fastest negotiated human rights treaty and it was unprecedented in the access it allowed for non-governmental groups and civil society to provide input to the delegations and the Chair of the Committee.

The treaty itself marks a paradigm shift in attitudes and approaches to people with disabilities. It takes to a new height the movement from viewing people with disabilities as objects of charity, medical treatment and social protection, towards viewing people with disabilities as citizens with rights, who are capable of claiming those rights and making decisions for their lives based on their free and informed consent as well as being active members of society.

The Convention is intended as a human rights instrument with an social development dimension. It adopts a broad categorization of people with disabilities and reaffirms that all people with all types of disabilities must enjoy all human rights and fundamental freedoms. It clarifies how all categories of rights apply to persons with disabilities and identifies areas where adaptations have to be made for persons with disabilities to effectively exercise their rights and areas where their rights have been violated, and where protection of rights must be reinforced.

Now, an important point.  The United States played a significant role in developing this treaty, and had a delegation at most of the Ad Hoc Committee meetings providing technical assistance, but the United States has not yet signed it. However, President Obama has come out in favor of the convention and said that he would sign it.  Historically the United States has been hesitant to enter into international treaties, and so having the presidential support is critical. Once the President signs it, it will be submitted to the Senate and then the Senate Foreign Relations Committee will consider it.  It needs to be approved by a 2/3 majority in the Senate before the President can proclaim its entry into force.

If the United States signs and ratifies the treaty, that means it is allowing itself to be assessed under international standards. So it goes beyond just saying we will abide by these standards. It involves a commitment to participate in the U.N. process and, in fact, it provides an opportunity for the United States to participate in helping to interpret how the convention is applied, not just in the United States but in other countries as well. 

Now, my organization, the National Council on Disability, has been involved with the Convention process since the beginning.  We’ve provided technical assistance on the drafting throughout the process and also pushed the President to sign it.  Then, in 2007, we decided that it may help the process if we took it upon ourselves to do a comparative analysis of US disability laws and the provisions of the Convention.  That’s this document here.  This analysis is a very preliminary, but very solid analysis, showing that the convention as a general rule is consistent with the principles of American law, consistent with the spirit of the Americans with Disabilities Act, and with the letter of the Americans with Disabilities Act.  For the most part, the convention is consistent with American law, and we could make an argument in good faith that these are principles that the United States has pioneered.

We also hoped that one of the outcomes from the release of this paper would be that of focusing the United States disability community on a discussion that would allow for confirmation or rejection of the premises set forth in the body of the analysis, in pursuit of a better understanding of U.S. disability law and the Convention.

We endeavored to analyze the issue in the way a treaty monitoring body would - to see if any area within federal law contravenes the Convention and/or whether there are gaps where legislation or practice might be introduced or reformed to ensure compliance. This is not an empirical analysis.  At this juncture, the treaty has not been subjected to the scrutiny and interpretation of an international monitoring body. The treaty creates a Committee tasked with reviewing regular reports of States Parties (states parties are the countries that have signed the treaty). It will ultimately be up to that Committee to fill in the gaps and choose between competing interpretations.  And the Committee has just begun that work at the UN – just this past week, actually.

So, what we did, we identified areas in which U.S. law is harmonious to that of the treaty’s requirements, as well as existing gaps in U.S. law when compared to each Article in the treaty.  We also highlighted potential areas within the body of U.S. disability laws that would require examination if the U.S. either signed and ratified the treaty, or desired to have its domestic disability laws and policies be of a level with the Convention’s coverage.

Now, as you all know, the U.S. legal system is a federalist one, meaning that both state and federal constitutions, statutes, and common law impact the rights of persons with disabilities. Our analysis focuses nearly exclusively on federal law, and specifically on the primary statutes. It was not intended to be absolutely comprehensive in scope.  Thus, while constitutional law and federal statutes rest at the top of the federal disability policy pyramid, there are multiple and various programs within the Executive branch that impact the lives of people with disabilities, although they will vary greatly in terms of longevity, sustainability, and actual impact. The ultimate conclusion we reached, as I noted earlier, is that there is no legal impediment to U.S. signature and ratification on the basis that, in large measure, the legal standards articulated in the treaty align with U.S. disability law.

The U.S. disability rights agenda, premised on a social model of disability, has exerted a powerful international influence in revising legal regimes affecting people with disabilities.  But the U.S. scheme, which is primarily an antidiscrimination one, has limits that are reflected in the gaps. Specifically, it has proven difficult to transform society’s institutional structures and attitudes towards marginalized individuals.  The U.S. disability anti-discrimination scheme has been further complicated by cramped judicial interpretations on threshold definition of disability issues, as well as uneven implementation of existing federal law.

An example of all of these factors involves employment levels for people with disabilities.  Observers have alternatively blamed restrictive Supreme Court decisions and noted the abysmal success rates of ADA Title I plaintiffs.  Just as importantly, however, are the missing pieces in the U.S. disability policy scheme, including health insurance gaps and lack of training and rehabilitation services, which can actually create disincentives and barriers to work.

These gaps are capable of being narrowed or eradicated through either more rigorous implementation of existing U.S. laws and policies, and/or through Congressional action. And we’ve already seen some of that in the past year with the ADA Restoration Act. To the extent that we identified gaps or potential inconsistencies between U.S. law and the CRPD, the tools of law reform and ratification processes could serve to address and facilitate ratification by the United States.

Now, where are these gaps?

Given that this is the health law society co-sponsoring this lecture, I thought I would discuss the article in the Convention dealing with health in more detail. 

Article 25 – Health

State, rather than U.S. law, mainly governs this right.

But first, what does the convention say?

Article 25 of the CRPD and Description of Corresponding United States Law

Article 25 – Health

States Parties recognize that persons with disabilities have the right to the enjoyment of the highest attainable standard of health without discrimination on the basis of disability. States Parties shall take all appropriate measures to ensure access for persons with disabilities to health services that are gender sensitive, including health-related rehabilitation. In particular, States Parties shall:

(a) Provide persons with disabilities with the same range, quality and standard of free or affordable health care and programmes as provided other persons, including in the area of sexual and reproductive health and population-based public health programmes;

(b) Provide those health services needed by persons with disabilities specifically because of their disabilities, including early identification and intervention as appropriate, and services designed to minimize and prevent further disabilities, including among children and the elderly;

(c) Provide these health services as close as possible to people’s own communities, including in rural areas;

(d) Require health professionals to provide care of the same quality to persons with disabilities as to others, including on the basis of free and informed consent by, inter alia, raising awareness of the human rights, dignity, autonomy and needs of persons with disabilities through training and the promulgation of ethical standards for public and private health care;

(e) Prohibit discrimination against persons with disabilities in the provision of health insurance, and life insurance where such insurance is permitted by national law, which shall be provided in a fair and reasonable manner;

(f) Prevent discriminatory denial of health care or health services or food and fluids on the basis of disability.

Coverage of United States Law

The United States has no universal health coverage system. The closest programs offered by the federal and state governments are Medicare and Medicaid. Medicare is a health insurance program administered by the federal government. To receive Medicare, a working-age individual with a disability must first become eligible for Social Security Disability Insurance by showing that he or she is unable to do any “substantial gainful work which exists in the national economy.” There is then a two-year waiting period to receive Medicare. Medicaid is a federal-state cooperative program that provides medical benefits of different types to various needy populations. States do not have to participate in Medicaid, but all have. States have flexibility in deciding what populations they have to cover and what benefits they will provide, although the Medicaid statute does have several requirements in terms of coverage and services. In most states, an individual who meets the Social Security Act’s definition of disability can receive Medicaid coverage.

To the extent that health care services are provided by private entities, they are covered by Title III of the ADA; to the extent that they are provided by public entities, they are covered by Title II and Section 504 of the Rehabilitation Act. There is a line of cases suggesting that health care providers cannot discriminate on the basis of disability. Other cases, however, have held that actions which are “neutral” but have the effect of impacting people with disabilities more harshly than the general population are acceptable under these statutes.

Insurance also occupies an uncertain place under the ADA. The courts are split on whether insurance policies are covered as public accommodations under the statute. The ADA itself has a “safe harbor” provision regarding insurance. At least one Circuit Court has construed this provision to mean that the ADA does generally apply to the content of insurance policies. Most circuits, however, have not applied the provisions of Title III to the substance of insurance policies.

Regarding medical treatment in the community, both the ADA and its regulations provide that public entities must administer services, programs, or activities in the most integrated setting appropriate to the needs of qualified individuals with disabilities. In Olmstead v. Zimring, two women with mental retardation and psychiatric conditions brought suit under Title II, claiming that the state of Georgia had discriminated against them by keeping them in institutionalized settings instead of community placements that were more appropriate for their needs. The State’s professionals had determined that community-based settings would be more appropriate for the women, but none were available. The Court held that this unjustified institutional isolation constituted discrimination within the meaning of Title II. However, the Court recognized that the duty to accommodate was not absolute.  If the accommodation would fundamentally alter the state’s mental health treatment program, it did not have to be provided.

So, the United States relies primarily on private life and health insurance and medical services, buttressed by the Medicaid and Medicare systems. Although these programs do provide certain services and coverage for some people with disabilities, the main apparatus constraining their application to people with disabilities is antidiscrimination law, such as the ADA or Rehabilitation Act. In some cases this has been successful; in others, not as much.

The existing mosaic of healthcare related disability law has been much criticized for not serving people with disabilities well. The backdrop to this criticism is that “many of the services people with disabilities need for independence and labor force participation – personal assistance and assistive technology being the most obvious – are typically regarded as ‘medical’ services for which the health insurance system is responsible. The problem is that private insurance often places severe limitations on coverage for disabling conditions. Private insurance policies can exclude coverage for certain named conditions, or impose annual or lifetime caps on permitted reimbursement for specific conditions (even if these caps are way below what is actually required). Moreover, private insurance policies may be particularly inappropriate and ineffective regarding people with disabilities because they trend toward acute, as opposed to chronic, care and typically require that covered treatments be “medically necessary,” which usually excludes durable medical equipment and assistive technologies. Public insurance, in the form of Medicaid or Medicare, incorporate restrictions that create disincentives for people with disabilities to work. And although the Ticket to Work and Work Incentives Improvement Act (TWWIIA), makes it possible for people to work and retain Medicare eligibility for eight years, benefits recipients who reach the end of that period abruptly lose their Medicare eligibility. Although Medicaid varies from state to state, it generally contains similar rules that act as disincentives to employment.

But again, as a general matter, the aims of the CRPD are consistent with US disability law, in respect to which significant segments of the treaty drew inspiration.  For the majority of articles, US law can be viewed as being of a level with the mandates of the Convention or capable of reaching those levels either through more rigorous implementation and/or additional actions by Congress.

Articles 33 – 40 address the implementation and monitoring of the treaty by States Parties.  The implementation scheme envisions a focal point within each government for matters related to implementation, as well as submitting reports on treaty compliance.  These precise bodies do not currently exist within the U.S. government. 

Conclusion

The gaps between U.S. law and the CRPD are not insurmountable, and should not stand as an obstacle to U.S. consideration of signing and ratifying this historic Convention. Most gaps can be closed through more aggressive implementation and enforcement of existing laws, combined, in some areas, with additional funding and/or legislative actions by Congress.  Additional federal measures supporting actions already in place by some states would also move the overall U.S. federal system closer to that envisioned by the CRPD.

CONCLUSION