John Foley, President

Larry Lorenzo, Vice-President

Orlando Girón, Secretary-Treasurer

Executive Director, Jim Jackson

El Guardián Editor, Joan Curtiss

Design/Layout/Production, Kathleen Mahoney

EL GUARDIAN

Newsletter of the New Mexico Protection and Advocacy System
Vol. 12, No. 2 Spring 1998


Legislature 1998: Progress But Vetoes Limit Service Expansion
-- Jim Jackson

Legislation passed in the recent session and signed into law by the Governor will implement an improved welfare reform program, provide health insurance coverage for uninsured children; establish minimum legal protections for consumers in managed care, and prevent future discrimination in health insurance based on genetic testing.

However, line item vetoes by the Governor have completely eliminated the General Assistance program, and reduced or eliminated program expansion for a wide variety of services to persons with disabilities.

The Child Health Act, sponsored by Sen. Linda Lopez and Rep. Ed Sandoval, will raise the income limit for Medicaid to 235% of poverty, making health insurance available for nearly all children in New Mexico who have no coverage currently available to them. A separate appropriation of $10 million will cover the cost of providing Medicaid services to some of the nearly 10,000 children who are already eligible for coverage but who have not been enrolled and thus lack health insurance. The Child Health Act also calls for a second phase of additional health care services for all children, if a federal waiver is granted.

Consumers of managed care will have more consistent legal rights and protections through the enactment of the Patient Protection Act, sponsored by Rep. Ed Sandoval. The bill covers persons in commercial plans, public employees covered through Risk Management, and Medicaid recipients. However, the Governor vetoed the section of the bill establishing an Ombudsman program, as well as the appropriation which would have funded the Ombudsman and the monitoring and enforcement of the Act's protections by the Department of Insurance. Although the Act was publicly supported by the managed care industry after being modified to meet their expressed concerns, a source in the Governor's office indicated that opposition to the ombudsman concept had been communicated privately to the Governor by at least one of the managed care plans. Last year, after publicly supporting a similar bill during the session, Presbyterian Healthcare Services requested that the Governor veto the bill, and he did so.

Other legislation signed into law includes the AT Lemon Law, which requires a minimum one-year warranty on assistive technology devices manufactured or sold in New Mexico; a bill requiring that all applicants for employment in agencies providing long term care services go through a criminal background check; and the Genetic Privacy Act, requiring confidentiality of genetic testing results and prohibiting health insurance companies from using the results of such tests to discriminate in offering insurance. (Information from tests already performed may continue to be used, and life insurance and long-term disability insurance is exempted from the Act).

Services for persons with developmental disabilities will increase, with at least $3 million and possibly $4 million in new funding available to meet the needs of persons currently on the waiting list for services. However, an additional $1 million for the same purpose was vetoed by the Governor, and $1 million of the new money can legally be spent by the Department of Health for any of the Medicaid waiver programs because it was not earmarked for the DD program.

The Governor's line-item vetoes in the state budget bill, HB 2, eliminated much of the service expansion for people with disabilities which had been approved by the legislature. This includes $2 million for early intervention services, some of which was needed to replace lost Medicaid funding; $12 million in additional funds to implement the Child Health Act; $200,000 to expand the Medication Aides program; $135,000 for additional attendant care; $300,000 for brain injury services; $185,000 for additional workers in Adult Protective Services; and half ($750,000) of the new funds appropriated for HIV/AIDS services.

The Governor also vetoed two bills which had been pushed hard by disability advocates. The Mental Health Parity bill would have authorized a two-year pilot program limited to state employees. Mental health services for employees and family members, involving the major neurobiological mental illnesses such as schizophrenia and bi-polar illness would have been offered on the same basis as other medical services. The pilot program approach, rather than a broader mandate covering all health insurance policies, had been decided upon in order to gain the support of the insurance industry. The only opposition to the bill in the session came from the Association for Commerce and Industry, which claimed it would eventually lead to a state mandate possibly increasing the cost of insurance and significantly increasing benefit costs to employers.

A bill to extend a moratorium on new ICF/MR facilities (while long-range planning was done to identify service needs), was also a victim of the Governor's veto pen. As a result, there is no legal impediment to existing or new provider agencies building new facilities, or converting existing homes and other facilities into ICF/MR. Licensed agencies serving Medicaid clients who need that level of care have an entitlement to reimbursement under the Medicaid program, since ICF/MR programs are not included in the Salud! managed care program. However, the Department of Health may have the authority to control admissions and reimbursement rates.

Making a Difference for People With Disabilities: P&A Service in FY '97 - Jim Jackson

From welfare reform and General Assistance cutbacks to implementation of Medicaid managed care; from community inclusion into DD programs to exclusion from schools for behavioral problems, the Protection and Advocacy System and its clients faced an enormous range of challenges in FY '97.

From the state Supreme Court to individual service plan meetings and from litigation to self-help advice over the phone, the P&A System played an active role in assisting persons with disabilities to overcome these challenges and protect their rights, allowing thousands of persons to become or remain productive and included as members of their community.

After 10 years of litigation and related advocacy by P&A, the controversial closure of the Los Lunas Center for Persons with Disabilities as a residential facility in the summer of 1997 was the final step in the community integration of over 500 individuals from two state institutions over the past five years. This completed the state's transition from a system reliant on institutional care to one in which all DD services are family and/or community based. Expenditures in the DD system have more than quadrupled during this time. As the year ended, the state had developed a plan, later approved by the court, to further develop and improve the community service system.

Earlier this year, P&A advocacy preserved vital services for individuals with disabilities whose plans of care would otherwise have been cut back as part of the state's "save in order to serve" initiative, and helped scrap further across the board service cuts.

After a successful legal challenge to the state's plan to cut back General Assistance for persons with disabilities, P&A defended against the state's appeal in the New Mexico Supreme Court. The high court upheld the ruling that regulations of the Human Services Department, which imposed time limits for benefits for persons with disabilities but not other GA beneficiaries, violated the ADA. In addition to the primary impact of restoring benefits to hundreds of beneficiaries with disabilities, the ruling strengthened the application of the ADA in New Mexico.

The state's implementation of Medicaid managed care (Salud!) required advocacy efforts on many fronts. P&A provided comments on HSD's regulations for the program, as well as the Department of Insurance's regulations. We hosted a meeting between federal monitoring officials and representatives of advocacy and consumer groups for persons with disabilities. P&A staff helped convene an on-going dialogue with Lovelace, one of the state's three Salud! contractors, which developed into their consumer advisory group. In partnership with Legal Aid of Albuquerque, we provided information to Medicaid managed care consumers about their appeal rights and provided assistance to numerous individuals. Working closely with Health Action New Mexico, P&A staff worked to promote the Patient Protection Act. When the 1997 version was vetoed by the Governor, we engaged in extensive negotiations with the managed health care industry and the Human Services Department and devised a substitute bill. As reported elsewhere in this newsletter, it was passed by the 1998 legislature and signed (with partial vetoes) by the Governor.

Through settlement of a lawsuit against the county jail in Albuquerque, P&A accomplished a number of critical objectives in the mental health area. The settlement requires a comprehensive program of screening detainees for mental illness or developmental disability, evaluation of needs for persons with disabilities, and provision of services to them, as well as training for guards. P&A monitoring helped assure that these commitments were honored.

P&A also negotiated a settlement of the lawsuit we filed against the State Lottery on ADA issues. This will increase access to the community businesses around the state which sell lottery tickets (there are over 1,000 vendors), heighten awareness of accessibility issues in this state program, and result in captioning of commercial announcements for the lottery.

Through our individual casework and service on a state work group, we affected state policy on suspension/expulsion and changed some of the practices of the Albuquerque Public Schools in a way that significantly benefits children with behavioral disabilities. P&A staff intervention also helped persuade APS administrators to continue the "school within a school", a successful integrated program at Rio Grande High School, which had been targeted for elimination due to budgetary reasons.

The Uniform Health Care Decisions Act was amended as we hoped - with language that we wrote and had sponsored - to assure that surrogate decision-makers take factors into account other than just the person's pre-existing disability or projected level of disability. P&A revised its model form for advanced directives, and provided training to mental health consumers as part of a state-wide consumer conference. We provided testimony to the Board of Education of the Albuquerque Public Schools on their proposed revisions to DNR (Do Not Resuscitate) policy. We continued to work with Continuum of Care to raise awareness of the legal issues and client rights related to DNR in community settings.

P&A worked with other key disability groups to form and support a larger coalition to respond to the government's initiative to drop a substantial number of children with behavioral disabilities from SSI. The coalition trained advocates to respond to calls and recruited private attorneys to provide free legal representation.

But these and many other systemic issues addressed by P&A are only the most visible services provided by P&A this past year. In addition to responding to nearly 3,000 requests for information or referral, and providing training to hundreds of consumers and family members around the state, more than 500 persons with disabilities received individual case advocacy assistance from the Protection and Advocacy System in 1997. These client cases involved issues consistent with the annual priorities of the agency, and required intervention by P&A staff in an effort to resolve client problems as favorably as possible.

The most common problems presented by P&A clients included issues related to obtaining or improving community-based services; abuse of persons with disabilities in various settings; neglect, including failure to provide for needed services; disputes with vocational rehabilitation agencies; education issues, especially suspension or expulsion of children with behavioral disorders; financial benefits, such as SSI; and other emerging problem areas such as the implementation of Medicaid managed care.

In a reflection of the commitment of Protection and Advocacy to serving the diverse population of the state, 63% (nearly 2/3) of the clients served are from minority ethnic/racial groups. This is a significantly higher percentage than is in the general population of the state.

PROTECTION & ADVOCACY HAS A WEB SITE
-- Joan Curtiss

Protection and Advocacy System of New Mexico is getting up to speed with the technology of the nineties. We are now on line! Our address is http://www.nmprotection-advocacy.com. For those of you who do not have your own computer, The Center for Development and Disability (272-3000) at 2300 Menaul NE, in Albuquerque, is offering free use of their computers to people with disabilities and their families. Most public libraries also have computers with access to the Internet for the public.

If you want to learn more about self-advocacy in the areas of special education (the most current version of New Mexico State Standards for Special Education), housing, working with the Division of Vocational Rehabilitation, assistive technology, mental health rights, or HIV issues, click on the links for publications and manuals from P&A and print out your own copy.

For easy access to some of the most useful web pages on disability law, just click on the link next to the rotating earth icon. You can instantly find yourself at the Health Care Finance Administration, Office of Special Education Programs, or Rehabilitation Services Administration. Many organizations have already analyzed current relevant disability issues and laws. These sites are available within seconds from our website.

Action alerts, such as information on legislative issues, impending changes in laws and regulations, the cut-backs in SSI for children and how to reapply/appeal negative determinations are updated weekly on our website.

E-mail us with comments and ideas, additional website addresses, or difficulties you may have had using some of the information or links. You may have a disability issue that you believe warrants immediate attention on the action alert and we could help you post that information. By extending our services to the Internet we are hoping to be more available to people throughout New Mexico and the country who are experiencing discrimination and rights violations. We can also assist in promoting legislation and other activities that will enhance services for those of us with disabilities.

Adoption Subsidy
-- Linda Tabar

Question: Can a family access adoption subsidy after finalization that entitles the child to a monthly subsidy and Medicaid card based on the child's income?

Answer: Yes. A little known federal court ruling on adoption issued June 25, 1992 was granted to Phillip A. Tabar of Álamogordo, New Mexico and the Burgess family of Tennessee. This landmark ruling covered several areas of adoption that may offset some of the high medical costs with medically fragile children and children with special needs. In both cases the families had been told that the children were in good health at the time of adoption. It was later discovered when severe problems came to pass that these children had important medical histories that had not been divulged to the prospective families.

The Region VI office of the federal Administration for Children and Families in Dallas, Texas ruled in their favor with this landmark case because the families did not have full disclosure before finalization. Phillip A. Tabar was awarded payment of subsidy retroactive to his date of placement. Burgess was awarded an earlier refusal of federal aid.

Question: How does adoption subsidy work, and can I negotiate for more?

Answer: Adoption subsidy can be negotiated at any time in New Mexico and be negotiated each year. During the application for subsidy, usually during the placement process, you should list services based on the child's documented needs. For example, therapy, respite care, equipment that Medicaid does not pay for, tutoring, tuition, non-covered medications, lifts for vans, and other services listed in New Mexico law can be requested. You can ask for a fair hearing if the amount of the adoption subsidy is not meeting the needs of the child. Increases in rates can occur at ages 6 and 12. Subsidy can be equal to, but not exceed what was paid in foster care. For instance, if the child was in therapeutic foster care at $2,500.00 per month prior to finalization, that figure could be asked for but not exceeded. There are two types of subsidy: Title IV-E federal and state subsidy. The state may, at their option, continue subsidy until age 21 according to federal law.

PAAT Works on Medicaid Funding of AAC Devices
-- Greg D. Trapp

One of the priority areas for the Protection and Advocacy for Assistive Technology (PAAT) program is Medicaid funding of augmentative and alternative communication (AAC) devices. These devices include an electronically generated voice for use by persons who do not have the ability to speak. In January P&A staff met with Human Services Department Secretary William Johnson. As a result of that meeting, we have formed a work group which is preparing an AAC funding prospectus for presentation to the Medical Assistance Division.

Some progress has already been made. In response to our initiative, the Medical Assistance Division recently notified managed care organizations that AAC devices are a covered benefit for children and youth under the Medicaid provisions for Early and Periodic Screening, Diagnosis and Treatment (EPSDT). Persons who are younger than 21 years of age and are eligible for Medicaid services may receive EPSDT. This notification of EPSDT funding for AAC services is a significant step forward. We are hopeful that we will be able to expand on this progress to include adults needing augmentative communication devices. If you have any questions about the initiative or about Medicaid funding of AAC devices you may contact the PAAT Program at the P&A office.

Interested in Fair Housing for People With Disabilities in New Mexico?Become a Tester or Accessibility Screener

People with disabilities and people without disabilities around the state (excluding Bernalillo County) are needed by P&A to serve as testers and/or accessibility screeners in our Fair Housing Project.

What do testers with the Fair Housing Project do?

Following a specific procedure, testers approach landlords, managers, or rental management agencies, and pose as a person interested in renting a house, apartment, or other type of home. This "tests" whether or not the landlord, manager, or agency acts in a way that may discriminate against people with disabilities in violation of the federal Fair Housing Act.

What do accessibility screeners with the Fair Housing Project do?

Following specific guidelines, accessibility screeners conduct preliminary site reviews to determine if multi-family housing complexes meet the accessibility requirements of the federal Fair Housing Act.

Are testers and accessibility screeners paid?

Testers are volunteers, but will receive training and a stipend of $25.00 for each test performed according to Project procedures.

What are the requirements for testers and screeners?
· attend a day long training in Albuquerque prior to conducting tests (costs of attending the training will be paid for by the Project.)
· strictly follow all procedures for conducting tests and submit written reports on test results (accommodations for disabilities can be arranged if needed).
· be available to conduct several tests for the Project this year (tests may take one to two hours to complete)
· provide a sworn affidavit on test results, or testify in court if required.

Interested? Call Shelly Haynes or Ellen Corbet, Fair Housing Project, New Mexico Protection and Advocacy System, 256-3100 (Albuquerque) or 1-800-432-4682 (state-wide, toll free) voice or TDD.

What a Person With a Disability Should Know About Translator Ethics

-- Ileana Johnson

As an English to Spanish translator I am often asked to translate documents for our clients with disabilities. These documents might include, for example, an explanation of the client's rights or an evaluation or report written by a clinician. I have also translated general disability-related information in the form of flyers or brochures.

It is important that these documents be properly translated so that they convey the message that is intended. Every professional translator should adhere to ethical standards of conduct outlined in the American Translators Association Code of Professional Conduct and Business Practices which include the following standards for translators:

The American Translators Association Code of Professional Conduct and Business Practices.

"As a translator, I stand between two languages and act as a bridge for the free passage of ideas from one side to the other. Because my knowledge, skill and discretion are essential to intellectual commerce, I commit myself to the highest standards of performance, ethical behavior and sound business practice.

1. I will endeavor to translate with utmost accuracy and fidelity so that I convey to the reader of the translation the same meaning and spirit the original conveyed to me. I acknowledge that this level of excellence requires:

a. mastery of the target language equivalent to that of an educated native speaker;

b. up-to-date knowledge of the source language and the subject area sufficient to understand the message;

c. continued efforts to improve my professional skills and to broaden and deepen my knowledge.

2. I will be truthful about my qualifications and business practices and will not accept assignment for which I am not fully qualified without the expressed consent of my client.

3. I will safeguard the interests of my clients as my own and divulge no confidential information.

4. I will derive no personal profit or financial gain from confidential information I receive in my professional capacity.

5. I will clarify all aspects of my contractual relationship with my client, preferably in writing, prior to performing an assignment and will strictly adhere to the agreed terms.

6. I will notify my client of any unresolved difficulties I may encounter in the performance of the assignment.

7. I will use a client's name as a reference only if I am prepared to direct the prospective client to the individual who can attest to the quality of my work.

8. I will respect and refrain from interfering with the business relationship that exists between my client and my client's client.

9. I will refrain from unfair competitive practices."

Protection and Advocacy is a disability rights agency which provides services to a wide variety of people including individuals whose primary language is not English or who may need information in Braille or sign language, for example. We have a federal mandate to do minority outreach to underserved populations, and we encourage other human service agencies to do so, as well. English and Spanish are both official languages in our state, and we should take pride in the cultural diversity found here.

Questions and Answers -- Colleen Miller

Q. Why do some people have guardians and other people don't?

A. A guardian is a substitute decision maker, someone who is legally appointed to choose what someone else can and cannot do. Generally, adults are able to make all of their own decisions; most adults do not have a legal guardian. However, whenever someone isn't able to make decisions by themselves, perhaps because of disability, a guardian may be appointed by a court to exercise powers, rights, and duties on behalf of that person.

Q. What if someone just needs help making some kinds of decisions, not all of them?

A. If a person can manage some aspects of personal care but not all aspects, a court may appoint a "limited guardian." That kind of guardian can only exercise choices within the areas designated by the court. A court could also appoint a "conservator," who helps make decisions about how money is spent. In some cases, where a large sum of money has been designated for a particular limited purpose, a person may have a "trustee" to control how that money is spent.

Q. If someone has a full guardian, does that mean that the guardian has total control over the other person's life?

A. Even with a full ("plenary") guardianship, an incapacitated person still has rights and freedoms that a guardian cannot take away. For example, all people regardless of their decision-making abilities, are entitled to be free from abuse, assault, and unnecessary restraint. No guardian can give those rights away.

Q. If I think I need a guardian, can I just agree to have a guardian appointed for me without going to court?

A. No. Under New Mexico law, no person may consent to the appointment of a guardian. Even if an individual believes that they need a guardian, there are very strict procedures that must be followed by a court, before any person loses the right to make their own decisions.

Q. If I have a guardian already appointed for me, can that guardianship ever be discontinued?

A. Under New Mexico law, you can return to the courts to ask to terminate the guardianship or to limit the guardianship. The person with a disability must give some proof that something has changed and now he or she has the capacity to make some or all of their daily choices. Once that proof has been made, it is up to the party that wants to keep the guardianship to prove that a guardianship clearly still is needed. Under New Mexico law, there is a strong presumption that each individual has capacity to be their own decision maker.