The Arc of New Mexico believes that for good work that improves the quality of life for people with developmental disabilities and their families to happen, we must operate from a core statement of beliefs. The Arc of New Mexico has its Mission Statement and holds to the same Position Statements as The Arc of United States. In addition, The Arc of New Mexico has created some position statements unique to New Mexico.

The Position Statements held by all Arc chapters as well as The Arc of United States include positions on:

Quality of Life


Rights:

Advocacy
Criminal Justice
Guardianship
Human and Civil Rights
Inclusion
Protection
Self-Determination


Life in the Community:

Aging
Behavioral Supports
Early Intervention
Education
Employment
Family Support
Health Care
Housing
Individual Supports
Sexuality
Spirituality
Transportation


Systems:

Direct Support Professionals
Prevention
Research
Service Coordination
Waiting Lists


The Arc of New Mexico has also developed position statements on Residential Services for People with Developmental Disabilities and The Crisis in the Provision of Services to People with Developmental Disabilities: A System of Support at the Breaking Point.



Residential Services for People with Developmental Disabilities

Issue:

The availability and variety of residential services for persons with developmental disabilities has expanded greatly over the past two decades. New Mexico no longer institutionalizes persons with developmental disabilities. While size alone cannot be used to measure quality, one indicator that services may not be truly individualized is when people with developmental disabilities are forced to live in groups larger than average family size. It is not clear that supports and services can be tailored to give individuals with developmental disabilities an opportunity to live in a community environment regardless of the severity of their disability. A system is developing which integrates person-centered planning. Although progress has been made, provider based focus of service delivery remains, as well as concerns about the cost of person-centered supports.

Position:

Principles The Arc of New Mexico upholds include inclusion, freedom of choice, promotion of independence, quality of service and independent case management. Every effort should be made to implement a service system which is person-centered and based on these principles.

People with developmental disabilities should receive supports and services which:

Promote inclusion and integration into the community in which they live;

Provide for freedom of choice as to where they live and with whom;

Promote independence, growth and self-determination;

Promote a lifestyle that would be acceptable to persons without disabilities;

Meet quality standards which exceed current professional practice by periodic redefinition of “best practice. Quality of life for an individual is more than mere compliance with a standard. Quality of life is reflected in personal satisfaction;

Avoid conflicts of interest by creating a case management system independent of the provider agency;

Have funding sources which follow the person and are not tied to a facility or location.

— Adopted by The Arc of New Mexico Board of Directors, July 19, 1998



The Crisis in the Provision of Services to People with Developmental Disabilities:
A System of Support at the Breaking Point

There are many, many direct support staff who are committed to a better quality of life for persons with developmental disabilities. They are professional in every sense of the word.

New Mexican’s with developmental disabilities are being cared for by too few direct support staff. This puts them at risk. Moreover, many people with developmental disabilities are unable to access needed services and supports altogether because providers are unable to recruit a stable and dependable work force.

The growing pressure on the provider system leaves The Arc of New Mexico with no choice but to call attention to the emerging problems.

This position paper is specific to the traditional service delivery system. The Arc will continue to advocate for other options such as self-directed services. The emphasis on self-direction may result in a change in the service delivery model in the future.

The Current Situation:

• Intense competition from the retail sector, technology and industry as a result of New Mexico’s growing economy has undercut provider agencies’ ability to recruit and retain both entry-level workers and supervisory/management staff.

• Front line direct care staff are the lowest paid human service workers in the state; their earnings, at nearly half the New Mexico’s average annual wage , place them near the federal poverty level .

• Providers of services to persons with developmental disabilities are often forced to hire unskilled, undereducated and inexperienced workers who often lack the basic skills necessary to assist others in developing their own life skills and may jeopardize the safety of those in their care. Providers are often left with no choice but to underpay staff, thereby causing a drift towards care problems such as abuse, neglect and/or exploitation.

• High turnover and vacancy rates cause provider agencies to spend a disproportionate amount of time and money on recruitment and training, thereby reducing resources available for actual service and support. Inexperienced staff are often placed in positions of support for persons with complex needs, either medical or behavioral, without the requisite training, experience or knowledge. Agencies are often given little or no alternatives but to place untrained staff or none at all.

• Incidents of abuse, neglect and exploitation of persons being served by the system have been identified in the Fiscal Year 1999 Developmental Disabilities Trends Data Summary by the Division of Health Improvement and the Long Term Services Division as the result of under staffing, lack of proper staff training and high turnover.

• Huge time demands without commensurate monetary compensation are made upon supervisors of direct support personnel who often must spend enormous time on personnel issues, recruitment and training rather than providing program services and clinical supports.


What needs to be done?

New Mexico must introduce stability to the direct support workforce by increasing compensation, offering incentives for training, developing a certification process and honoring a career ladder for the support staff. Such improvements will help to make direct support a profession that is trusted by the families of persons with disabilities and recognized as a sustainable career choice by both current and potential support staff.

• A minimum base salary must be established for support staff; corresponding increases should be allocated for their supervisors. Annual adjustments tied to the Consumer Price Index must be requested by the Department of Health with the assurance that salaries are advanced with the Index increments.

• The New Mexico Department of Health, Long Term Care Division, must make stabilization of the provider workforce one of its highest priorities and key to providing services and supports to individuals awaiting services.

• A standard title and a uniform certification and career ladder process must be established for direct support staff.

• Ongoing training and education for direct support and supervisory people must be honored, encouraged and rewarded with incentives such as tuition reimbursement and opportunities for advancement.

Failure to implement meaningful short- and long-term solutions will leave our community services system for people with developmental disabilities unable to provide an acceptable quality of service and will put their safety at risk.

— Adopted by The Arc of New Mexico Board of Directors, November 13, 1999



Position on Self-Determination

Why Self-Determination?
The position statement of The Arc of the United States is that “people with mental retardation and related developmental disabilities have the same right to self-determination as all people. They must have opportunities and experiences that enable them to exert control in their lives and to advocate on their own behalf.” In support of this, The Arc of New Mexico presents this position statement.

Individuals with developmental disabilities and their families want to be able to access supports and services that will enhance life as they choose to live. Currently, to get the supports and services they want and need, they must often give up a great deal of autonomy and adjust to living by a bureaucratic set of rules and regulations as required by the developmental disabilities waiver program. Self-determination is a philosophy that promotes individuals and families as the decision makers, directing the system supports and services that make sense in their lives.

Self-determination programs have demonstrated that when individuals and families are making decisions and directing the services funded through public programs, services are better, they are more satisfied and it is more cost effective. These are reasons why it is important to develop opportunities in New Mexico for self-determination:

• Individuals and families can be creative about how to use resources and can purchase supports from community resources, not just traditional providers.

• The quality of a person’s life is not strictly defined by the requirements of the system.

• Individuals and families can use money more effectively to purchase what will work for them. With the money saved, wages and earnings for the direct care professional can be improved and more people can be served.

• Today’s system too often requires well-meaning parents and professionals to creatively manipulate the system in order for people to get what they want. With the flexibility and choice in self-determination this kind of “jumping through the hoops” will not be necessary.

• Provider’s responsibilities will be determined by what people want. Individuals and families will make decisions and accept risks for themselves.

Responsibility for Self-Determination
It is important they everyone involved in self-determination – individuals with developmental disabilities, family members, support brokers, state officials, staff, etc. – share the responsibility for the wise use of public dollars. Individuals and family members that have the opportunity to self-direct funds available to them through public sources need to be thoughtful, creative and effective about choosing what to purchase, which will result in good value for every dollar spent.

Self-Determination represents a Power Shift:

Self-determination represents a real power shift from control of people to supporting people so they can control their own lives.

Individuals and families need information to understand the power shift in control, to “get the idea”. They need to learn how to self-direct their own services. Attention must be paid to empower them to make use of the full potential of self-determination.

Family members, guardians, providers, state personnel and others involved with the individual or family in self-determination must respect and support their choices and not try to pressure them to change their minds. No one should impose their values on an individual or family; their desires must be respected.

Individuals and families may naturally want to treat direct care professionals that they hire in their own homes as guests. This makes it hard to correct them and establish the formal relationship between employer and employee. They could use guidance in how to be more businesslike.

On the other hand, the more informal kind of relationship that can develop when the direct care professional works in a person’s home helps to connect that staff person to the individual or family in a personally meaningful way. This can create a positive commitment to remain in the service to the person.

The individual or family should set wages and literally give the paycheck to their staff.

Guardians shouldn’t interfere with the individual’s self-determination; they should support and encourage the individual.

The Design of a Self-Determination Model:

Individuals may choose a friend/advocate to help represent them, particularly if they don’t have a family member that can be involved. This person will be respected within the process of planning and providing services. An individual may choose a self-advocate to be their friend/advocate. For adults, they may choose someone other than a family member to help represent them.

The design of services and supports must be flexible – unique to each individual or family. It will reflect their interests, culture, traditions, patterns of living, physical needs, etc. The state needs to protect the independence and flexibility of each person choosing self-direction and respect their autonomy in making decisions for themselves. The state should refrain from “second-guessing” the choices individuals and families make. The state should not interfere with the decisions that individuals and families make unless there is proof beyond a reasonable doubt that the individual or family is not competent in its decision-making.

Quality is not guaranteed by paperwork. Relationships with family and friends and being able to control the services you get create safety, security and well-being. Self-direction should require minimal bureaucracy and paperwork. The focus should be on what makes a quality of life for the individual or family, not on some outside standard.

Individuals and families will have more flexibility of what they can purchase than the current system allows. Services and support can be purchased from generic community resources, from individuals or from service provider agencies. When they do purchase service from a provider agency, the process should be “user-friendly” and easy.

There needs to be some dependable allocation process, for both the state and the individual or family. This process should be individualized and should not place incentives on spending up to a certain amount nor should it force the person to spend less than they need. Also, there needs to be assurance that the budget can change with changing needs.

Individual and families must have flexibility in the use of their budgets. They must be able to pay for ongoing support and services or one-time only purchases. It must be possible to change a budget easily when needs change.

Essential Elements:

Key to self-determination is to have people to provide resource management & coordination that will guide and help individuals or families understand the options, learn about resources, develop skills at employing their own staff and suggest things that might be helpful. They should know how to connect individuals and families with whatever they need in order to direct support and services; locally, state wide and around the country. Coordinators need to be adept at networking to help connect with other people, organizations and community members. They also need opportunities to learn and be informed about resources.

Individuals, families, resource coordinators, plan facilitators, and fiscal intermediaries all need opportunities to learn and network in their own communities and with others around the state or country.

Individuals and families need to make sure the direct support professionals have the information they need to successfully serve the individual.

A self-directed arrangement requires only an agreement and approved budget with the state agency and a fiscal intermediary.

Individual may hire family members to do personal care.

For some, self-direction will reduce or remove the need for guardianship because it provides alternatives. Having the assistance of a friend/advocate, fiscal intermediary, or a personal agent in the process of planning and controlling services can help provide the protection and supports that guardianship has been called upon to do in the past.

Individuals/families may assign some responsibilities and tasks to third parties for provision of their services and support, including service providers, so long as there are no conflicts of interest for the service provider.

Quality assurance must be based on what individuals and families have to say about their supports and services.

Accepted by delegate vote
November 7, 2003



Assisted Out-Patient Treatment Position Statement

Policy: People with developmental disabilities must have dependable, high-quality treatment for mental illness available and accessible whenever necessary.

Position: People with developmental disabilities must have access to adequately funded, appropriate, affordable, accessible and timely treatment for mental illness throughout their lives.

• Behavioral health care providers must be knowledgeable about individuals with developmental disabilities and the manner in which mental illness manifests in those individuals.
• Individuals with developmental disabilities and mental illness have the right to receive treatment and not be discriminated against because of their developmental disability.
• Individuals must be able to access mental health treatment at any time it becomes necessary.
• Individuals with developmental disabilities and mental illness have the right to choose to receive or reject mental health treatment after having all the options and consequences explained to them in a manner that they can comprehend within the scope of the law.
• Individuals with developmental disabilities must be given enough information to understand the benefits and risks of the proposed treatment.
• Individuals with developmental disabilities must be offered the opportunity to ask questions and receive answers understandable to that person.
• Individuals with developmental disabilities and mental illness, who have the capacity to make decisions and do not have a court-appointed guardian, must not be forced to accept any treatment through deceit, threat or coercion.
• Police and other law enforcement personnel must not be used to force compliance with the acceptance of mental health treatment.
• Individuals with developmental disabilities and mental illness, who have been determined to be decisionally incapacitated in a court of law and who have a court appointed guardian, have the right to have their choices taken into consideration when treatment decisions are made on their behalf.
• Court appointed guardians must consider the least restrictive alternative when making a treatment decision.
• Court appointed guardians must seek out all available information, including alternatives to treatment options presented, when making treatment decisions.
• Court appointed guardians may choose to support the decision to refuse treatment expressed by their ward after discussion with the ward of the options, risks and benefits of treatment.
• Individuals with developmental disabilities and mental illness have the right to change their mind regarding previously made treatment decisions.
• Individuals with developmental disabilities and mental illness, their family members and representatives have the right to file complaints and grievances regarding the provision of mental health treatment and have those complaints and grievances addressed in a timely manner.

Adopted by The Arc of ew Mexico's Board of Directors
March 11, 2006