I am honored to be the new Executive Director of Disability Rights Legal Center (DRLC), a national cross-disability civil rights organization whose mission is to champion the rights of people with disabilities through education, advocacy, and litigation. DRLC encompasses a wide range of practice areas serving people with all types of disabilities, including people affected by cancer and HIV/AIDS.
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DRLC/CLRC Federal Legislation and Regulatory Advocacy
Federal Legislation Supported by DRLC in 2012
- S. 2097 - Comprehensive Cancer Care Improvement Act of 2012: CLRC supported S.2097 which would have required patients with Medicare coverage to receive a “Comprehensive Cancer Care Plan.” It would have also provided for additional research into coordination of care, symptom management, and palliative care for cancer patients.
- H.R. 3522 - Family Act of 2011: The CLRC supported H.R. 3522, which would have provided an income tax credit for the costs of certain infertility treatments. While we recognize that a tax credit is not the best way to ensure that low-income persons with cancer have access to infertility treatment (many cancer treatments cause infertility and preservation methods do exist), we viewed it as a first step in recognizing the need for these services.
- H.R. 3938 - Drug Shortage Prevention Act: CLRC supported H.R. 3839 which would have addressed the limited supply of certain prescription drugs, including some cancer drugs. It would have created a national “critical drug list,” and provide for an expedited review for those drugs in order to prevent shortages – an issue which arises in the cancer context due to the low demand for certain drugs.
- H.R. 2032 – To protect the interests of each resident of intermediate care facilities for the mentally retarded in class action lawsuits by federally-funded entities involving such residents and in Department of Justice actions that could result in an agreement to move such a resident from that resident's facility: Despite the bill’s lofty title, H.R. 2032 would have made it more difficult for advocacy organizations and the Department of Justice to protect the rights of persons with intellectual disabilities through the class action process by placing onerous pre-filing requirements on those entities.
- Convention on the Rights of People with Disabilities: DRLC strongly supported the United Nations convention that purposes to promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities, and to promote respect for their inherent dignity by calling several Senators. Despite U.S.’s long history in the development of the convention, the Senate failed to ratify the convention.
Federal Regulations Supported by DRLC in 2012
- IRS REG-130266-11 - Proposed Additional Requirements for Charitable Hospitals: CLRC submitted comments on the proposed tax regulations for charitable hospitals with regards to their charity care policies, including making those policies public and available and restricting collection actions that may be taken. CLRC’s comments stressed, among other things, that hospital charity care policies must not only outline how much a low-income person will have to pay when they have no other coverage for hospital services, but also have access to a reasonable payment plan as most low-income people cannot pay even drastically reduced amounts up front.
- Comments the Final Rule on Electronic Benefits for Social Security Payments (31 CFR § 208): CLRC urged the SSA to modify its rules governing direct deposit transfers and Direct Express Card contracts so that recipients could continue to retain at least 35% of Social Security benefits, even when wages are garnished to ensure that people have access to food, shelter, and medical services where possible.
- CMS File Code CMS-9980-P - Proposed Regulations Regarding the Patient Protection and Affordable Care Act: Standards Related to Essential Health Benefits, Actuarial Value, and Accreditation: CLRC, together with DRLC, wrote extensive regulatory comments to the federal proposed standards for Essential Health Benefits – the minimum standard that plans selling on the state health care exchanges must provide starting in 2014. The proposed regulations did not provide enough specificity or stringent enough consumer protections to fully implement the statutory language of the Affordable Care Act.
- Comments to U.S. Patent and Trade Office on Genetic Diagnostic Testing: CLRC wrote comments on to the United States Patent and Trade Office (USPTO) regarding the role that cost and insurance coverage have on access to and provision of genetic diagnostic tests. The CLRC presented evidence, based on a survey of CLRC callers and other community members, to the USPTO that insurance companies are less likely to cover the costs of genetic testing for preventive reasons than for treatment purposes and that HMOs were more likely to provide coverage than other types of private insurance.
- Comments on Proposed Regulations Implementing Section 503 of the Rehabilitation Act, RIN 1250-AA02 : DRLC wrote comments in support of the Office of Federal Contract Compliance Program’s (OFCCP’s) proposal to require covered contractors to collect anonymous, self-selected data from applicants and keep records that would enable those contractors—as well as OFCCP—to determine the effectiveness of their targeted hiring efforts, to enter linkage agreements with organizations that serve individuals with disabilities, and to take other steps to improve recruitment efforts.
- DOT-OST-2012-0098 Re: Proposed Technical Assistance Manual (TAM) for Air Carrier Access Act (ACAA) Compliance: DRLC wrote comments in overall support of the proposed updated TAM as an essential document to effectuate air carriers’ self-guided compliance with disability anti-discrimination law. DRLC applauded the promotion of polite and respectful treatment of customers and passengers with disabilities beyond the mandates of the ACAA and Part 382. However, DRLC addressed the need for clarification or improvement on certain sections, specifically the need for TAM to provide clear examples and criteria to aid airline personnel in properly implementing regulations.