"Health Reform and Advocacy: Critical Issues for Persons with Disabilities"

Heather A. McCabe


The Patient Protection and Affordable Care Act (PPACA) and the included Community Living Assistance Services and Support Act (CLASS) have great potential to be catalysts for a more inclusive and community based health care system.   The attention to covering all citizens will, if implemented appropriately, be a real change for many who have been unable to obtain or afford health coverage due to pre-existing conditions, including disability.  While the act appears to be making needed changes, the real work is only beginning.  The thousand pages of law will be turned in to many more pages of regulation at the agency level.  Though some regulatory provisions have been completed (see https://www.cms.gov/LegislativeUpdate/downloads/PPACA.pdf), many more have yet to be started.  It will be vital that the community of persons with disabilities and their advocates participate in the regulatory process in order to ensure appropriate implementation.

Elimination of discrimination on the basis of pre-existing conditions, no lifetime cap on benefits, increased access to community and home-based services, and mental health inclusion in basic packages are frequently cited as some of the most positive components of the law.  While these changes are viewed as positive in general, concerns remain about how the changes will affect cost of policies and business ability to provide coverage through employment when their coverage is impacted.  The recent one year exemption to the provisions given to McDonald’s is one of the most prominent examples of the impact of these concerns.  CLASS also may have hurdles to overcome to be implemented in a way that is meaningful.  Persons must have paid in to CLASS for five years before they can receive coverage.  In addition, there are work requirements which may preclude some classes of persons with disabilities from fully participating in the plan.  One will only be able to see the full impact of some of these provisions over time.  Participation in the regulatory process through response to calls for public comment, active lobbying of appropriate agencies, grassroots movements, and any other available process will be necessary to have input in final regulations. Additionally, states will be responsible for creating their own Insurance Exchanges as required by the law or will be included in the federal exchange.   Advocacy at the state level will also be necessary to the process.

Some portions of the PPACA will be of particular importance to the community of persons with disabilities.  A few of the key sections providing advocacy opportunities will be outlined below.

Some of the early regulatory tasks have been definitional.  One section of the law required creation of uniform definitions for items such as “preexisting condition” and “lifetime limits” including how they are implemented and any prohibited behavior.  These regulations are now complete.  The Consortium for Citizens with Disabilities commented on the interim regulations.  Others were also involved and will need to remain involved throughout the regulatory process if we are to ensure inclusion and appropriate coverage for persons with disabilities.

Criteria for certification of “Qualified Health Plans” under the PPACA will be created under Health and Human Services regulations.  While there are 8 specific criteria set out by the PPACA which must be followed, there is much which will be determined during the regulatory process.   As the process of defining these plans takes place, advocates will need to be able to articulate which services are most critical to the disability community.  When compromise is needed, what can reasonably be compromised without giving up core services and what are non-negotiable services?  When groups within the advocacy community do not agree, how are these differences handled so that the policy makers are not confused?  Some of the needed services may have a community based component.  PPACA has been written with an emphasis on these services and along with possible advocacy in the Qualified Health Plan component, there will be additional opportunity for advocacy under the community based services section of the law.

The attention to community based services in the PPACA is an important achievement.  How the law is actually implemented will make the difference in whether or not the emphasis on community based services is merely aspirational or truly achieved.  Health and Human services will be promulgating regulations designed to (1) “allocate resources for services in a manner that is responsive to the changing needs and choices of beneficiaries receiving noninstitutionally-based long-term services and supports (including such services and supports that are provided under programs other the State Medicaid program), and that provides strategies for beneficiaries receiving such services to maximize their independence, including through the use of client-employed providers”; (2) “provide the support and coordination needed for a beneficiary in need of such services (and their family caregivers or representative, if applicable) to design an individualized, self-directed, community-supported life”; and (3) “improve coordination among, and the regulation of, all providers of such services under federally and State-funded programs.” [1]

  All of these goals are important.  The specifics of what will be required of payers in relation to these goals will be even more important.  Careful participating in the regulatory process will be required to ensure appropriate implementation. 

The regulations written to implement the CLASS act will also be important to ensuring the most access to community based services.  CLASS will be a voluntary program allowing persons to pay premiums and receive money to pay for home based services.  The PPACA calls for the design of three possible plans for consideration as the final program.  Advocates will need to work to ensure reasonable plan design and implementation.

There are additional sections which will require attention, but these are some of the key provisions providing a need for advocacy over the next few years. 


[1] Section 2402