| Letter written by Linda Hazelton For 6 months a group of 7 HIV positive people have
been spearheading the effort to get the State of Maine to implement the
HIV Medicaid waiver that was approved by the federal government in Feb of
2000. We talked to legislators, wrote letters, started a post card
campaign, contacted the Governor and Commissioner of Department of Human
Services, rallied and picketed. We got support for efforts and now the
funding for the waiver is in the July 1st budget. It really is amazing
what 7 people can do. Linda Hazelton And many who stood beside them and and cheered on their battle.
|
My own comments and letter to Linda What words can I myself say about this strong and brave group of people? I commend them with the most respect one can feel for other human lives. I am lucky enough to have Met Linda Hazelton about a year ago upon writing this letter. I have grown to know her as a dear friend, and to love her as someone of my own family. When I met Linda, she was fighting with a group of people in her home state of Maine for rights that would simply allow them and other like them to simply Live. When she told me about the 1115 Medicaid waver which is in effect in my own home sate, It looked like a battle that was never going to be won. Thank god that Linda and her companions were ones to say "Why not?" "how come?" " and " Well that is just not good enough!". I watched over the months as Linda went to every statehouse meeting to push for the passing of this bill, I helped her to get petitions signed from all over the country, and worst of all, I had to watch her be told "no" , to get sick a few times and to live through stress and aggravation that literally seemed to be taking away every ounce of energy from her body. This group of people never gave up, and as they were promised, The 1115 Medicaid Waiver will be in full effect as of July 1st. 2002. My dear friend Linda is a young married mother of two who grew up in the State of Maine, and still lives there to this day. Linda had to have a serious operation in the early 80's and walked away with more than a scar. The blood that they had given to her during her surgery was in fact contaminated with the lethal HIV virus. When diagnosed with this a few years later, Linda was told by doctors that knew little about this new Virus at the time to "get her things in order, for she had under a year to live". I can only imagine the look on her face, and the rough words that came out of her mouth, for Linda is simply not someone to lay down and die without a fight for anything she believes in. Her family, her life, her friends all in trade of a virus that had somehow made its way into her life? "I don't think so". As with everything that life has thrown at her, she fought hard and to this day (17 years later) she is still Hiv+ and fighting hard to stay that way. Linda is the woman that reminds everyone in a large support group when someone's birthday is coming up. She is the person that let's us know when someone is sick and in the hospital so that we can send cards, flowers, or just call to let them know we are there for them. She is the person that when asked a question, you will only get the truth no matter how hard the truth may be. She is the one that calls you on the phone to make sure you are eating, that you are taking your meds and that you have everything you need. Linda is more than a friend, she is like the shadow that watches over us when we think no one is looking. I wish there was a medal of honor of sorts I could give to you Linda, for in my own heart, you deserve one. The most I can offer you is my friendship and return the love to you. But all and all, you are a hero to me. When I hear Bette Midler sing " You are the wind beneath my wings" I always envision your face in my mind. I hope that you continue to bless people with your hard side, your truth, wisdom and nurture for decades to come. all and all. I love you. Daniel P. Leone |
||||
|
What Is the Medical Waiver? and what does it do to help? Maine Waiver The goal of the Section 1115 waiver is to provide a Medicaid demonstration program for persons who are diagnosed HIV positive and have an adjusted gross income less than or equal to 300 percent of the federal poverty level (FPL) guidelines with no resource test. Enrollment would be open to individuals who do not currently meet Medicaid income and disability criteria as well as those individuals who may have lost Medicaid eligibility because of a change of status. Maximum Number of Enrollees: 300 individuals. Under the limited enrollment option, the state may freeze new enrollment, but may not disenroll those currently in the demonstration program. Enrollment ceiling applies only to the demonstration and all potential enrollees must be screened for eligibility for traditional Medicaid before joining the demonstration.
Demonstration Time Period: Benefit Package: The benefit package for the demonstration is a limited one. All covered services will be available to enrollees regardless of whether they are related to the treatment of HIV disease. It is anticipated that some enrollees may become eligible for the traditional Medicaid program because of disease progression that triggers full-blown disability and/or a reduction in income. In such circumstances, individuals will be disenrolled from the waiver program and enrolled in the traditional Medicaid program with full Medicaid benefits. Covered Services: Prescription drugs, physician and other medical provider visits in independent and hospital based practice settings, laboratory services, mental health services, substance abuse services, hospitalizations, and case management services. All covered services will be offered without limits or co-payments. Service Delivery: It is anticipated that patients will use the existing health and support service provider networks as their primary source of physician referrals. Current Ryan White providers work through a coordinated case management system. People with HIV access services through the agency that serves their geographic area. Individuals are covered under the Ryan White system until their eligibility for other payment sources is determined. These providers would continue to be the first step in the process and would refer individuals to the Waiver program as they currently do to conventional Medicaid and ADAP. Provider Reimbursement: Services will all be delivered through the normal Medicaid fee-for-service reimbursement methods and amounts.
Quality Assurance/Evaluation: Maine's Bureau of Medical Services will form a Clinical Advisory Committee. This Committee will set treatment guidelines, protocols for drug-disease interactions, and give clinical feedback on the compliance and success of the waiver demonstration on the outcomes of patients living with HIV/AIDS. A key feature of the demonstration will be modeling how decision support can enable physicians, case managers and other allied health professionals to better manage care through regular and timely access to patient information. The Medicaid agency will analyze and process pharmaceutical data on a timely basis and provide patient-specific feedback to physicians and case managers. The agency will work closely with its core group of providers with large HIV/AIDS caseloads to assess when guidelines need to be modified and distributed to providers throughout the state. Other features of the demonstration will include the use of specialized pharmaceutical edits and audits for both Medicaid HIV waiver and non-waiver Medicaid patients. Specialized edits will occur at the pharmacy at the time drugs are dispensed. Pharmacists will be asked to review drug orders for inappropriate combinations and potentially adverse interactions. The agency will also work with case managers to develop and implement guidelines to work with targeted groups such as drug users and the homeless. The agency will conduct an enrollee survey within 15 months of implementation. At a minimum, the survey will include such measures as enrollee satisfaction with program administration and care provided, and include measures of use of emergency rooms, waiting times for appointments with primary care providers and specialists, and access to special providers and services. Budget Neutrality Provisions The budget neutrality cap will be for the Federal share of the computable cost of $56 million for the 5-year demonstration. The federal share of Mainešs Medicaid expenditures - its federal medical assistance percentage (FMAP) - is 66.22 percent. HCFA will enforce budget neutrality over the life of the demonstration, rather than on an annual basis.
|
||||||||||||||||||