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Source: VOR Weekly E-Mail Update, March 12, 2004 TOP 1. Grassroots Lobbying Tips 2. Defining Choice 3. What Olmstead is Not, by Bill Sherman 4. Cost Comparison Study 5. Choice in state laws and legislation 6. Model Testimony: Real life example from Maryland that pulls it all together
1. Grassroots Lobbying Tips Summary: A document prepared by VOR follows. Two other very good resources are also available online: "Hot Tips for Advocates," by The Arc of Washington State, http://www.arcwa.org/publications.htm; and "Making Your Case," by Minnesota Governor's Council on Developmental Disabilities, http://www.mncdd.org/extra/publications/Making_Your_Case.pdf. HOW TO APPROACH YOUR LEGISLATORS This statement is intended to provide simple but effective guidelines on how to influence state or federal elected officials who represent you and your family member with mental retardation. Whether by letter or in person, your goal is to always provide reliable information (don't stretch the truth!) based on personal experience and knowledge as a parent, guardian, family member and/or advocate, as well as an active member of a larger constituency of families with similar concerns (i.e., Voice of the Retarded, or your local parents organization). You should provide legislators or their staff with written information that will help them arrive at a logical and responsible decision that will be in keeping with the outcome you are seeking. The more they hear from you and others, the more their reality awareness level on that subject increases, and the greater is your opportunity to prevail. Remember, like all of us, legislators have a learning curve. It is our job to help an elected official become more educated and more comfortable with an issue that is vital to you, their constituent. They need and want your help in telling them how legislation would affect their district. Effective lobbying is based on friendly, informative, respectful, long term relationships. PERSONAL MEETINGS *Always call for an appointment and indicate why you want to meet. *Plan an agenda for the meeting. * On arrival, introduce yourself and thank them for the appointment. * Time meeting to be 15 minutes or less. Introduce the issue up front. Keep it short and to the point. . * Use facts. When possible, have documentation in support of your position. Have a copy to leave behind. * Advocacy organizations are resources for support information. If you are a representative of a larger group that shares your concerns, have a business card with your name and the organization's name printed on the card to leave with the legislator. * Be friendly, informative, tactful, respectful, polite and don't over extend your welcome. You may need to visit again. * If an inquiry requires a later response, follow-up by phone if time is of the essence, otherwise by mail. * Always send a thank you note. * Always keep a copy of all written correspondence and replies. BY MAIL A successful and effective letter is straightforward, simple and to the point. It should be one page if possible, with supporting enclosures when needed. * Identify yourself as a constituent and give your name, address, phone number, fax, etc. * If appropriate to the issue at hand, identify your membership with a larger group that shares your concerns. * Use your own words and your own stationary. If writing as a representative of a group, use the organization's stationary. * Include the issue and bill number and title, if applicable, in the first paragraph. Be brief and discuss only one issue per letter. * Explain what you think should be done about the problem. Be clear about what you see as an appropriate outcome, even if your request is personal. * If writing about legislation, ask for the present status of the bill, and planned future action. * Also write when your legislator has done something of which you approve. A note of appreciation will make your legislator remember you more favorably the next time you write. * Write or call if you do not get a response within a reasonable time, or your response is a form letter that does not address your individual concerns. You can request a personal response. * Always keep a copy of all written correspondence and replies. TIPS FOR TESTIFYING 1. Be Yourself! Someone asked you to testify because of who you are and what you and your family have experienced with the health care system. Start off with your name where you come from and where you work. Be clear about what organization you represent if you are there on behalf of a group. 2. Tell your story. The real, personal examples of your family and your child with special health needs are what set you apart from others who might testify. Talk about the daily challenges (finances, job, siblings, etc.) you and your family face because of your child's health condition. 3. Use pictures or graphics. Passing around a photo of your family makes your story even more real. 4. Provide written testimony. If possible, type it and have enough copies for the entire committee. Include your name, address, and phone number. Don't expect anyone to read more than a page during the hearing. If you need or want to submit long reports, give them to the staff of the people hearing testimony --preferably, a few days before the hearing. 5. Provide your ideas on solutions. What would have made a difference for you and your child? Try to be practical and specific. 6. If possible, talk dollars and cents. Mention how you think money could be saved, but make sure your numbers add up. 7. Be factual. Always tell the truth or risk losing your credibility. 8. Be polite, courteous, and respectful. lt returns to you. 9. Control your temper. If you are losing control, provide written testimony only. 10. If specific legislation is involved, explain how it will affect your child and family. 11. Do not be afraid. You are talking to people who may have experienced similar situations within their own families or through friends. And you are an equal with the policymakers and politicians you face (often you know more about the particular subject about which you are testifying). 12. Keep it short. One page written (really!) or five minutes oral is enough. 13. Be prepared for questions. It's OK, however, to say, "I don't know." 14. Do not be redundant. If someone before you has said pretty much the same thing, agree with that person and don't repeat. Before You Go -- Allow plenty of time to beat the hearing-a half day at least. It helps to get a sense of what's happening before you testify. Wear nice clothes that make you feel good. Encourage and support others to testify. Don't always be the only one there. After the Hearing -- Thank members of the committee, especially anyone who was especially helpful or sympathetic to your issues. Establish relationships with appropriate policy makers and their support staff. TOP 2. Defining Choice ==> Webster's dictionary Choice n 1: the act of choosing: SELECTION 2: the power or opportunity of choosing: OPTION 3: the best part 4: a person or thing selected 5: a variety offered for selection. ==>Medicaid Law: 42 U.S.C. §1396n(c)(2)(C) A Medicaid Home and Community-Based Waiver shall not be granted unless the state provides satisfactory assurances that such individuals who are determined to be likely to require the level of care provided in a hospital, nursing facility or intermediate care facility for the mentally retarded are informed of the feasible alternatives, if available under the waiver, at the choice of such individuals, to the provision of inpatient hospital, nursing facility services or services in an intermediate care facility for the mentally retarded. ==> Medicaid regulation: 42 C.F.R. §441.302(d) When a recipient is determined to be likely to require the level of care provided in a hospital, nursing facility, or intermediate care facility for the mentally retarded, the recipient or his or her legal representative will be - (1) Informed of any feasible alternatives available under the waiver, and (2)Given the choice of either institutional or home and community-based services. ==> Medicaid Regulation: 42 C.F.R. §441.303 The [state] agency must furnish CMS with sufficient information to support the assurances required by §441.302, including * * * (d) A description of the agency's plan for informing eligible recipients of the feasible alternatives available under the waiver and allowing recipients to choose either institutional services or home and community-based services. ==>Penny Thompson, (former) Acting Director, Center for Medicaid and State Operations, HHS, in a letter to Carole Sherman (February 5, 2001) (excerpt): Federal Medicaid policy supports an individual's right to choose where they receive Medicaid services for which they are eligible. For example, States are required by Federal law to offer individuals who are eligible for Medicaid home and community-based waiver services the choice between community-based care under the waiver program or institutional services. ==>Olmstead v. L.C., 119 S. Ct. 2176 (1999) Olmstead set forth a three part test to determine if community placement is appropriate (i.e., institutionalization is unjustified): (a) the State's treatment professionals have determined that community placement is appropriate; (b) the transfer from institutional care to a less restrictive setting is not opposed by the affected individual; and (c) the placement can be reasonably accommodated, taking into account the resources available to the State and the needs of others with mental disabilities." 119 S. Ct. at 2181 (emphasis added). A majority of Justices in Olmstead recognized an ongoing role for publicly and privately-operated institutions: "We emphasize that nothing in the ADA or its implementing regulations condones termination of institutional settings for persons unable to handle or benefit from community settings...Nor is there any federal requirement that community-based treatment be imposed on patients who do not desire it." 119 S. Ct. at 2187. ==>"The Olmstead "choice" provision and guardianship rights," by Patricia Williams, Esq., September 6, 2003 (excerpt) Although there has been much discussion within the disability community of the meaning of "choice" and how "choice" can be exercised by persons with severe developmental disabilities, there has been no genuine legal challenge to the authority of parents of minor children and guardians or conservators of adults with developmental disabilities to be primary decisionmakers in those areas recognized by competent courts of jurisdiction. ==>The Developmental Disabilities Assistance and Bill of Rights Act, 42 U.S.C. §2001(c)(3) (c) POLICY. -It is the policy of the United States that all pro-grams, projects, and activities receiving assistance under this title shall be carried out in a manner consistent with the principles that- * * * (3) individuals with developmental disabilities and their families are the primary decisionmakers regarding the services and supports such individuals and their families receive, including regarding choosing where the individuals live from available options, and play decisionmaking roles in policies and programs that affect the lives of such individuals and their families. ==> Individuals with Disabilities Education Act Regulation 34 CFR § 300.551 Continuum of Alternative Placements (a) Each public agency shall ensure that a continuum of alternative placements is available to meet the needs of children with disabilities for special education and related services. "Continuum" shall include "instruction in regular classes, special classes, special schools, home instruction, and instruction in hospitals and institutions." 34 CFR §300.551(b). TOP 3. What Olmstead is Not DON'T BE MISLED ON WHAT THE OLMSTEAD SUPREME COURT DECISION SAYS by Bill Sherman, Esq. (1) What Olmstead is Not: "Olmstead" is not a federal act or statute. Rather, it is a U.S. Supreme Court decision, which reinforced the rights of individuals with mental retardation and their parents and guardians to choose the residential setting that is best for these persons. (2) How Olmstead is misused: In support of their objective to downsize and close ICF/MR (Intermediate Care Facilities for the Mentally Retarded), certain advocates are emphasizing portions of the Court's opinion regarding "unjustified institutionalization" and ignoring important parts of the Court's decision. (3) The Olmstead decision supports facility-based (institutional care) for those individuals whose severe impairments require the close care found in such settings. A majority of Justices in Olmstead recognized an ongoing role for publicly and privately-operated institutions: "We emphasize that nothing in the Americans with Disabilities Act or its implementing regulations condones termination of institutional settings for persons unable to handle or benefit from community settings. . . Nor is there any federal requirement that community-based treatment be imposed on patients who do not desire it." 119 S. Ct. at 2187 "Unjustified isolation, we hold, is properly regarding as discrimination based on disability. But we recognize, as well, the States' need to maintain a range of facilities for the care and treatment of persons with diverse mental disabilities, and the States' obligation to administer services with an even hand." 119 S. Ct. at 2185. The plurality opinion in Olmstead stated: "Each disabled person is entitled to treatment in the most integrated setting possible for that person - recognizing on a case-by-case basis, that setting may be an institution." 119 S. Ct. at 2189. (4) Olmstead encourages a continuum of service options for disabled persons - home, community and institutional: In addressing the issue of when a disabled person's care may be changed from institutional placement to community placement, the Olmstead decision set forth a three part test to determine if community placement is appropriate: "(a) the State's treatment professionals have determined that community placement is appropriate; (b) the transfer from institutional care to a less restrictive setting is not opposed by the affected individual; and (c) the placement can be reasonably accommodated, taking into account resources available to the State and the needs of others with mental disabilities." 119 S. Ct. at 2181 (5) People with mental retardation, especially individuals with severe and profound mental retardation, and their families have vastly different support requirements than those with physical disabilities. As families age, their abilities to be the primary care givers (and fiscal intermediaries) will also change. Arkansas should continue its continuum of services for each stage of care-giving. We are families and friends of disabled persons who support the full continuum of residential options required by the disability community and addressed by Olmstead. For many years, Arkansas has offered competent and compassionate care through its state-operated and private intermediate care facilities. In recent years, the state has also offered support for families who care for their disabled children at home and has steadily increased its support of community-based services (through the home and community-based waiver). TOP 4. Cost Comparison Study VOR Press Release April 2003 | 