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TO: NDSC Members and Affiliated Parent Groups
FROM: Susan Goodman, Director, Governmental Affairs
DATE: February 8, 2006
Bill Passes with Damaging Medicaid Cuts
On February 1, 2006, the House of Representatives passed the Budget Reconciliation Act (also known as the Deficit Reduction Act) by a vote of 216-214. This means that advocates came within 2 votes of defeating this harmful bill. The bill poses serious threats to services for the following reasons:
- It allows mandatory cost-sharing for Medicaid services. States will be able to deny services to individuals if they cannot pay their portion of the cost of services.
- Currently, the bill has no limits on cost sharing for Medicaid beneficiaries below 100 percent of the federal poverty level. SSI beneficiaries with disabilities could be required to pay any level of cost sharing their Governor chooses.
- Medicaid beneficiaries with incomes from 100 - 150 percent of the Federal Poverty Level (approximately $800 - $1200 monthly for an individual) could be required to pay up to five percent of their monthly income for co-pays for all Medicaid services.
The good news is that the response to NDSC's Action Alerts on this issue was gratifying. We must not only continue, but also increase our strong advocacy efforts. The implementation of the budget cuts will depend heavily on the states. Therefore, members need to be ever vigilant about the actions of state legislatures and Governors.
Suggested Actions
Family Voices, a national, grassroots clearinghouse for information and education concerning the health care of children with special health needs has a volunteer coordinator in every state. You may wish to contact this person to join in collaborative advocacy efforts, obtain information about developments at the state level, etc. The website for Family Voices is www.familyvoices.org.
Write a letter of thanks if your member voted against the Budget Reconciliation Act. Express your disappointment to those who voted for the cuts. Below is the link to the House roll call vote http://clerk.house.gov/evs/2006/roll004.xml
More Cuts Likely
The President introduced his FY `2007 budget on Monday, February 6th. The Center for Budget and Policy Priorities analyzed the budget and reported as follows:
"The budget also contains new cuts in Medicaid, which provides health insurance to low-income children, parents, seniors, and people with disabilities. The budget proposes legislative changes in Medicaid that would reduce federal Medicaid funding by a net of $1.5 billion over five years and $5.1 billion over ten years, as well as regulatory changes that would reduce federal funding by an additional $12.2 billion over five years. (No ten-year figure is provided for the regulatory changes.) A substantial majority of these Medicaid changes would be achieved by shifting costs to states. That likely would induce many states to reduce eligibility or scale back health benefits for low-income Medicaid beneficiaries, possibly by using the authority that the just-passed budget reconciliation bill gives states to increase co-payments, impose premiums, and narrow the health services that Medicaid covers."
To read the entire article, go to http://www.cbpp.org/2-6-06bud.pdf.
NDSC will monitor and report on actions on the federal budget that impact individuals with disabilities.
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Clarification on Environmental Protection Agency
Proposed Pesticide Regulation
Last fall, NDSC received several inquiries about a proposed pesticide regulation that was purportedly allowing, in studies conducted, commissioned or used by the Environmental Protection Agency (EPA) testing of pesticides on children with disabilities. NDSC Governmental Affairs Director Susan Goodman studied this regulation and concluded that the regulation, in fact, explicitly banned intentional dosing of all children, including children with disabilities.
The Disability Policy Collaboration, a partnership between the ARC and United Cerebral Palsy issued the following statement to warn people about some of the misrepresentations being made in Alerts generated by other organizations. We believe that this statement accurately reflects the proposed regulation (which is now in the stages of becoming a final regulation) and are passing it along to all of those who expressed an interest in this issue.
Alert !!!
Proceed with Caution
There are a number of action alerts currently circulating around the country, mostly entitled something along the lines of: "EPA TO ALLOW PESTICIDE TESTING ON ORPHANS & MENTALLY HANDICAPPED CHILDREN," claiming that the federal Environmental Protection Agency (EPA) is proposing to "treat children as human guinea pigs" by intentionally giving them pesticides for research purposes without their consent.
The Arc and UCP are submitting comments on the proposed regulations on Monday, December 12. The comments will be available to everyone at that time, but we would like to caution advocates that many of the alerts that are circulating are not entirely accurate in what they are purporting that the EPA is proposing. Most importantly, the EPA clearly states in its proposed rule that it will not conduct or support research involving intentional pesticide exposure of any child. This language applies to all children, no exceptions, and to all research by the EPA, contracted for by the EPA or conducted by third parties for review or utilization by the EPA, involving "intentional exposure" of a human subject.
The confusion leading to the inaccurate alerts arises from other provisions of the EPA rule that DO NOT apply to "intentional exposure," but to epidemiological and environmental studies in which children might be tested or studied who, for example, live in farming communities where pesticides are routinely used and where the EPA needs to determine their effects. With regard to these types of studies, the EPA requires parental or guardian consent for a child's participation. In order to provide additional protections to children, however, the EPA is proposing to require personal "assent" from the child and has a provision for waiving that "assent" in the case of children who are unable to give it - like infants or some children with cognitive disabilities.
Again, this "assent" on the part of a child, and the potential for waiving the assent, does NOT apply to studies involving intentional exposure to pesticides, only to studies where exposure would occur regardless of whether or not a study was being conducted - AND parental consent would still be required for the child's participation. An exception to this parental consent is proposed, however, for children who are the victims of parental child abuse.
Since the rule does allow intentional exposure studies of fully consenting adults, we will recommend that clear language be included that would prohibit such studies on adults who are unable to give fully informed consent and that guidance be issued to help researchers determine an adult's capacity to fully consent to any potentially harmful testing.
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If you have questions or comments about the Newsline, please contact Susan Goodman at Susang1961@aol.com. |
