The newly signed Patient Protection and Affordable Care Act, a dramatic reform of the health care system, contains numerous benefits for families living with neuromuscular disease.
The legislation, approved this week by both Houses of Congress, has features taking effect over the next several months that have implications for people with disabilities. These include expansion of insurance coverage for children and young adults, a ban on insurers' ability to place lifetime caps on coverage, and passage of a long-term care option known as the CLASS Act.
While MDA did not take a position for or against the overall health care bill, the organization supported elements of it and was actively involved in representing the needs and concerns of its members during the negotiations that led to its passage.
“We represent a widely diverse community,” said MDA Vice President – Advocacy Annie Kennedy. "For this reason, MDA will continue to be nonpartisan, but we will also work to identify and explain the parts of the law of particular concern to people with disabilities, and to vigorously represent their interests in the political process."
Summary of bill's features
Several provisions are scheduled to go into effect by the end of September:
The CLASS Act
In an important advance for people with disabilities, the law creates a new, voluntary long-term care option called the Community Living Assistance Service and Support (CLASS) program.
Working individuals will be given the option of having a small amount of money (yet to be determined) deducted from their paychecks. The money will go into a fund to help the individual purchase nonmedical supports and services needed to maintain independence, should the employee ever become disabled.
MDA has championed this legislation, sponsored by the late Senator Edward M. Kennedy (D-Mass.) and Representative Frank Pallone, Jr., (D-N.J.).
“The fund will work much like Medicare and Social Security, except that employees will have the option to opt out of this program. It will be a safety net for people who need it,” Annie Kennedy said.
Although not all will go into effect right away, other measures of particular relevance to people with muscle diseases include:
The new law also establishes the Community First Choice Option in the Medicaid program. This new program, derived from the Community Choice Act, a bill supported by MDA, provides an increased federal Medicaid match for states that provide home and community based attendant services and supports, rather than serve people with disabilities in institutions.
Implications for research
The new law creates a Patient-Centered Outcomes Research Institute, a nonprofit entity charged with identifying research priorities and conducting research to compare the effectiveness of medical treatments and technologies.
Specifically, the bill calls for the institute to "assist patients, clinicians, purchasers, and policy-makers in making informed health decisions by advancing the quality and relevance of evidence concerning the manner in which diseases, disorders, and other health conditions can effectively and appropriately be prevented, diagnosed, treated, monitored, and managed through research and evidence synthesis."
The institute will be run by a board of governors, with different advisory panels for specific medical areas. It will report annually to Congress on its actions and also will make information publicly available through a Web site.
MDA will have more updated and detailed information in the coming days, weeks and months as the bill's provisions are implemented.
For more information
Visit myMDA to participate in a message board about the new health care reform legislation.
Editor's note: this article was updated March 26, 2010, to reflect U.S. Senate and House approval of final elements of the bill.