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Editor’s note: This is a first-person account of disability advocate Linda Martinez de Pedro by her friend, writer Janine Bertram Kemp. Advocate Fighting Lonely Battle for SurvivalNEW MEXICO — Linda Martinez de Pedro’s world — a blend of cultures — seems to belong in another country. New Mexicans joke that much of the U.S.A. does not know their state is part of it. On a walk through the streets of Santa Fe, one can hear many languages: Dine (Navajo), Keris and Tiwa (Pueblo languages), Hopi, Spanish and English. Even directions are different here: “Take Road 76 into Rio Arriba. Look for a stand of cottonwoods. Pass mile marker 88, but if you get to the Ortiz Gallery, turn around. You’ve gone too far. Take the dirt road until you get to the trash box. Then turn left.” Those words guide me back to the home of Linda Martinez de Pedro. I’m bursting with excitement. It has been many months since we’ve seen each other. I’ve grown to love this “sister,” whose inner depth matches her lightning-quick intelligence. Her land, her words and her spirit invigorate me. When I visited her on March 8th, Linda had $20 left to live on until the 31st. She was forced to ask friends for small donations. How does one reconcile this state, which prides itself on spending long-term care dollars in the community, with a few bureaucrats in the Aging and Long Term Services Department (ALTSD) who cut Linda’s personal assistant hours and put her life in jeopardy? 
“I’m raising my grandson and have to fight for enough services and supports to stay in my home,” Linda said. “I’ve been on the state’s disabled and elderly waiver. A few months ago, they said they’d made a mistake and given me too many hours. They cut my hours by one-third. I’m a high quad with breathing problems. When I appealed, they said if I wanted more care, I should go in a nursing home. It’s a déjà vu nightmare.” Linda is a C5 quadriplegic who lived through a brutal winter. Unusually cold weather lasted for months. There was 3 feet of snow on the ground, which made utility bills skyrocket. On her monthly income of approximately $1,000, Linda supports her teenage grandson and herself. An income of $12,000 per year is well below the poverty level, though Linda would never call herself poor. “Two of the children I raised once asked me if we were poor,” she said. “Kids at school called them that. ‘Do you have food on the table? Do you have a warm house and a bed to sleep in? Do you have ancestors and a culture? Do you have love?’ I asked them. We’re not poor. We just don’t have money.” As I write this, tears of relief fall: I was scared that she would not make it. When we talked on the phone, I knew that it was not only the extremely low temperatures that could send her into the next world. She had suffered a bout of depression and, at one point, was hospitalized for pleurisy. She told me she was tired of the perpetual battles to keep personal care assistance and of bureaucrats attempting to slash her services once again. She’s been fighting to get hours back. Now it’s clear she will live long enough to win. Linda is no wet-behind-the-ears advocate. She won a 1978 federal lawsuit, based on Section 504 of the Rehabilitation Act, which required her state to put a program in place that would support her decision to stay in the community and raise her son. Now, New Mexico is among the top five states in the country for long-term care dollars spent to house people with disabilities in the community instead of in nursing homes and institutions. It’s a distinction hard fought for and finally won by disability rights advocates. Linda is also an organizer who worked with the Rainbow Coalition, fought to keep out the drugs rampant in her community, and raised nine children, only one of them her own. She’s a juried artist and has an oil-painting series called “Visions and Dreams of Old Chimayo.” Linda is a superb orator and storyteller who introduced Jesse Jackson in 1984 at the Democratic National Convention in San Francisco. She is also an acquaintance of New Mexico’s current governor, Bill Richardson, who is now seeking the presidential nomination. One would think that if any New Mexican had earned the services and support necessary to live in the community, it would be Linda. She should be honored and nurtured for starting it all. It hasn’t happened that way. New Mexico has four disability-specific waiver programs: disabled and elderly, medically fragile, AIDS and developmentally disabled. All require services to be decided upon and put in place by caseworkers and health management agencies. These professionals eat up a large amount of service dollars. Recently, ALTSD initiated the “Mi Via” self-directed Medicaid program to allow people with disabilities more service dollars by eliminating the cost and inefficiency of agency managers. ALTSD has been working to educate consumers with disabilities as well as state staffers about the benefits and flexibility of “Mi Via,” which means “my way” in Spanish. The program began at the end of 2006; Linda applied in January but was not initially accepted. She thinks that was because a top bureaucrat doesn’t like advocates, especially strong women, and targeted her. After that, she was barely getting by. Her case manager, reasoning that it was too great a risk to leave Linda without attendant care, put in for the entire year’s budget of respite hours. Fortunately for Linda, her reapplication to the Mi Via waiver program was accepted on April 1st. Bureaucratic “problems” and service cuts and the stress they produce have proved life-threatening to Linda. What could they mean to others with disabilities who do not speak out, advocate and negotiate the bureaucracy and legal system? How many of our sisters and brothers are falling through the cracks? How many are shunted off to nursing homes and other institutions to wither and die, hidden away? The Centers for Medicare and Medicaid Services (CMS) is administering $1.75 billion in federal grants to get people with disabilities out of nursing homes and institutions, and allowing them to stay in their communities. Even states that do not have these CMS grants have a combination of federal, state and private foundation monies for long-term care services in the community. Negotiating consumer-friendly policy and helping people like Linda fight to live at home is not an easy struggle. The problems of putting policy into practice, of finding affordable, accessible, integrated housing can make one feel like Sisyphus, the mythical character destined to forever roll a huge boulder up a hill only to have it roll back down just before he reached the top. Many CILs, however, are working hard, supporting each other, and sharing the best practices. For those interested, the Consumer Task Force on Real Choice Systems Change has a strong technical assistance center (http://www. cms. hhs.gov/RealChoice). How does your CIL rate in getting long-term care funds for the community? As Linda learned, not all CILs are helpful. She fought her battle virtually alone because her CIL is not advocacy-oriented. Some centers have been active in ensuring that their state’s long-term care policies are aligned with a “nothing about us without us” philosophy. They are key policy planners that ensure that money is spent so that people with disabilities can choose where and how they want to live. Those CILs have advocacy specialists that work with individuals like Linda to ensure that essential service hours are maintained. Without them, it is far less likely that long-term care dollars will be spent to give people with disabilities real, self-directed choices about their housing needs. ******************************** Janine Bertram Kemp is a writer and longtime disability rights activist who has been involved with the Real Choice Systems Change federal program and the Money Follows the Person initiative. The Oregon resident is a board member of the National Coalition of Disability Rights and the Disability Rights Center. |
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