jump to the LaJolla Plan

The parent of the normal child skips monthly PTA meetings and his behavior is considered normal. The parent of the exceptional child skips monthly meetings, and he is said to be uncaring and hard to reach.

A couple with normal children divorce. They are said to be incompatible. The couple with an exceptional child divorce, and it is said that the child ruined the marriage.

A group of normal children's parents read that the number of teachers and classes has been reduced, and they bemoan the present state of education. A group of exceptional parents read that the number of special classes has been cut, and they must march upon the legislature.

The parents of a normal child are told that because their child is having reading difficulties, it would be "nice" if they could work with her at home. The parents of the exceptional child are told that if they do not work with their child she will not learn!

What We Believe

Parents of developmentally delayed children experience many emotions over and beyond those felt by every parent for his or her child. The anger, depression, worry, helplessness, and confusion may fluctuate over time, but they will last as long as the parent grows with the child. As children grow up, parents' anxiety grows, for they must spend more time worrying about how their adult son or daughter will function in the world, and how he or she will survive once they are gone.

Siblings, too, experience many conflicting emotions regarding their handicapped brother or sister. Some feel anger at having to assume child care roles; others resent the extra attention parents give a disabled sibling. As they grow older many may feel guilty that they were normal. Some are concerned about their own children's potential for a handicap.

The parents of handicapped children are, first of all, parents. They share the same desires and expectations of all parents. An early publication by Stout and Langdon (1958), described characteristics shared by all parents. Paraphrased, these include:

1. Parents want their child's consultant, social worker, case manager, teacher, care provider etc. to be a person who likes children and commands respect of both children and adults.

2. Parents want to feel assured that the professional will let them know if anything is not going well with their child.

3. Parents want the professional to be honest.

4. Most parents want to know what goes on when they are not present, but hesitate to ask.

5. There are suggestions and objections parents would like to make, but doubt if they would be welcomed.

6. Parents are usually pleased when the professional asks their help in carrying out mutually agreed-upon prescribed activities.

7. Parents want the professional to know their child as an individual, to like him and to accept him.

8. Parents expect great things of the professionals working with their child.

9. Many parents think that parent-professional relationships, particularly with teachers, can gradually taper off as the child grows older.

Perhaps this sounds simple, but the fact is that many parents, overwhelmed by their own problems, are unaware that there are many others who face the same circumstances. They sometimes do not realize that many problems can be solved and much suffering alleviated through joint action. Parents must unite their efforts. When they are separated, in competition with each other, ignorant of their potential power, they can be overlooked, mistreated, preyed upon and used by people who have other things in mind than the well being of the disabled person. But when parents, consumers and professionals are determined to solve their problems together, they can become a potent and influential force that cannot be ignored.

Professionals, especially teachers, who work with handicapped persons often comment that parents don't care; they won't participate, won't get involved, won't come to meetings and conferences, and are only interested in their own children. To a degree, this is true, because parents of developmentally disabled children tend to be isolated, cut off from regular association with others who have the same kind of problems, and trained by their association with traditional professionals to believe they are inept and can't do anything to solve their problems. Many are unaware of the strong effect they can have on professionals and services.

Professionals, however, must recognize the value of the parent as a participant in planning and delivering services, as well as an advocate for additional resources with which to expand such services. They must encourage participation and respect parent ability so that, together, they can accomplish things in which they share a common concern.

The role of the professional depends on the situation. It could be that of the "consultant" who is there primarily to provide facts and interpretations. Or, it could be to provide encouragement and suggest resources or approaches. In areas where no existing group is currently functioning, a most important service the professional can perform is to identify a few potential parent-leaders and help coordinate their first few meetings, after which, parents should be in charge. Following are some ideas about establishing successful relationships with parents.

Effecting Partnerships

Communication is the key to understanding among all those concerned with the disabled individual. There must be communication before any kind of constructive cooperation can occur between the professional whose job is to help, and the parent whose role is to nurture. If the professional considers the parent incompetent, how can the former expect to gain the respect and confidence of the latter? If the parent sees the professional as arrogant and unwilling to listen, how can they cooperate for the good of the disabled child?

Parent-professional relations will be enhanced and effective involvement facilitated if communications with parents: (1) build a parent-professional partnership team to directly serve the disabled person; (2) provide growth experiences for the parents themselves; and (3) provide opportunities for the establishment of friendly relations and mutual understanding. These communicative goals cannot be achieved unless the professional is able to accept the parents unconditionally. This acceptance may be difficult without frequent and effective contacts. These contacts can be made during conferences, joint planning efforts, and group meetings.

Conferences

Parent conferences will be more effective if the professional projects the feeling that the meeting was arranged so that the professional and the parents can learn from each other. The professional must believe that he/she can learn from parents or his/her efforts to project the feeling of mutual learning will fall flat! Indeed some parents are more expert in certain areas of professional knowledge than the professional. The individual who can avoid the pitfalls of feeling threatened and inadequate because of this abundance of parental knowledge can benefit from the information. Parents and professionals can work toward feeling comfortable when exchanging information.

Mutual participation in a system of communication will bind parents and professionals together more closely regardless of the content or structure of the communication. To a great extent, the following generalization makes a lot of sense: "A teacher, doctor, or parent who cares about what he is doing can do almost anything and win..." (Kagan, 1967). Professionals must care about parents as well as their children!

The Team Approach

A time-honored tradition in recent special education history, the team approach involves the experience and expertise of professionals from several fields, all of whom contribute their knowledge to discovering innovative and successful ways of working with handicapped individuals. As early as 1956, professionals were advocating parental inclusion in the interdisciplinary team because of the special knowledge parents had. However, some professionals never really meant or understood the implication of full team membership for parents. The team they conceptualized was captained or coached by the professional. Parents were generally on the line, on the bench or, in many instances, in the bleachers (Stout & Langdon, 1958; Wolfensberger & Kurtz, 1969).

Professionals must look upon parents as valuable team members who are doing the best that they can within the circumstances of their life. Professionals must give consumers the dignity and respect they deserve as human beings. They must recognize the fact that most parents love their children, want to be near them, want to be good parents, and want their children to have lives that are as satisfying as possible.

Parent Meetings

In order for the consumers to have some kind of impact on the people making the decisions affecting them and their children, communication and organization must be paramount. Communication implies a two-way exchange of facts and ideas. Organization implies a method of continuing the communication. To have any kind of continuing communication among consumers, and between consumers and service providers, there must be some form of organization.

The parent meeting can provide a vehicle for establishing continuing communication. This meeting may take the form of "parent-to-parent" workshops where parents share experiences to stimulate others to become active. Parent-to-parent group effect "parent exchanges" and assertiveness training, as well as serving as information centers.

The meeting place may be crucial to the success or failure of a parent-professional group, particularly in the beginning. It may never be possible for some parents to overcome their feelings that the school building is a formidable and disapproving environment. The meeting certainly could be held in a comfortable and relaxed environment.

The strategy of planning a "non-meeting" has been an effective way to increase parent attendance. A "non-meeting" is a gathering of persons around a common event such as a social mixer. No set agenda or schedule is used and people interact informally. Non-meetings can be held in community meeting rooms or private homes. The intent is to break down barriers between parents and professionals, allowing them to relate to each other on more "human" levels. Non-meetings encourage spontaneous and informal communications which enhance the building of warm and respectful continuing relationships.

Once parents meet and identify a common problem the group can begin to meet formally. The first task is to make an assessment of what the group wants to accomplish. My advice to parents is this: Start with an ideal. Don't be awed by the task ahead. Take it on a piece at a time. Be careful not to turn it into a vehicle for personal gratification or ego satisfaction. Share responsibilities. Establish a means of regular communication among members. A well written newsletter can instill enthusiasm. Try to impart valuable information to enlighten the membership, encourage action, and provide a constant link with members who may not be able to attend all meetings (Des Jardins, 1971).

Professionals and parents should not give up in despair when members of the group fall short of full commitment. Every member has a different level of commitment depending on the circumstances of his life.

Harnessing Parent Power

Most professionals are organized, have the mandate to provide services, and are supposed to have the know-how about and the access to technical knowledge. Parents, on the other hand, are disorganized, spread out, and spend most of their time supporting and caring for their families. Many parents, particularly those of older children, have been turned off by the difficulties they have encountered in trying to obtain services over a dishearteningly long period of time. They are the ones who are most likely unaware that times have changed, and that many new programs, benefits and rights can make their parenting responsibilities easier. They are the ones who do not attend workshops, symposiums and conferences for parents. Reaching out to these people will afford professionals an excellent opportunity to forge a valuable partnership which can be beneficial to all concerned, and lead to improved services for the disabled child.

"Parent power" has become more than a slogan; it is a political movement (Des Jardins, 1971). The number of parent groups organized and dedicated to achieving more and better services has increased dramatically in the past l0 years. Such organizations are now forming coalitions dedicated to working together. In the face of the current administration's economic posture, it is imperative for such coalitions to grow even closer and stronger.

Being an Advocate

Often it falls on the consumer to take the initiative to turn systems around and make the right things happen. To pursue the role of an advocate means having to learn the workings of the bureaucracy from the Capital down to the local arena. It requires cultivation of contacts and adapting to their procedures, methodology and jargon. It also helps to learn how to give the impression that one represents more than one actually does when the adversary may be influenced by "numbers." The support of the greatest number possible is always a potent ally.

An advocate's strongest allies are the parents of handicapped individuals whose needs are not being met. There are issues that will attract parent attention to a common cause. In one instance, the threat of loss of services attracted more than 800 California consumers to a meeting in 1979 which pressured the administration to reduce the contemplated cutback. Local abuses and injustices have always attracted those who have suffered similar abuses, or who know people who have similar concerns.

The old adage "strength in numbers" is most applicable. A parent advocating for his or her child is only one voice, a voice that can easily be ignored, one person who can be postponed or rescheduled at the desire of an agency. A group of parents and professionals, knowledgeable and educated in assertiveness, presents a strong united front, demanding services for all of its children. This type of voice is much more difficult to ignore. "Strength in numbers" is a concept that parents of developmentally disabled children need to give careful consideration to. Professionals should participate in coalitions of parent groups and professional organizations, but should give careful consideration to their role.

Advocates should not be shy about disseminating information about a forthcoming fair hearing or investigation to as many parent-communication sources as possible, but they must not violate the confidentiality of those involved unless written permission is obtained. Regular and brief news releases on items of interest to the appropriate local newspaper contact person and electronic media news departments ensures getting more responsive attention when it's really needed.

More and more administrators are recognizing the value of "parent facilitators" who contact other parents. Some regional centers have introduced "parent case managers" and are training parents to be their own case managers.

Impacting the System

Systems work best for those who know what services an agency is mandated to provide. It is important to ask the right questions, and as lawyers know, it is better to know the answers already! Each public agency exists because laws were passed mandating that particular agency to provide certain services. A copy of that legislative mandate is easily obtained by calling your local legislator's office and requesting it, or by request to the agency involved. Employees of an agency are sometimes not aware that their own agency is mandated to provide specific services.

It is important to determine whether the service you seek is one for which there is a legal entitlement or a moral entitlement. If it is a service that is legally authorized, the best approach is the legal approach, and the best argument is the law-and-order argument. Bureaucrats cannot refute this; they cannot tell you that they do not intend to provide a legally entitled service.

It is important to know the distinction between legal requirements and policy requirements. If you are refused a demand on the basis that "it would be illegal," demand to know the statute and have a lawyer check the statute before accepting the claim that it is not legal. A demand is often refused on legal grounds when it is simply a policy requirement. A policy requirement can be changed much more easily than the law.

Continue to persist in your demands until you get the service. If the service is not forthcoming implement the fair hearing procedure or whatever other due process recourse is available. Fair hearings are not necessarily the starting point when a problem arises. However, initiating the fair hearing process alerts the complainant to properly exhaust and document all available remedies.

Not all problems can be resolved by fair hearings. The next alternative is to try to move bureaucracies. Moving bureaucracies may be tougher and take longer than seeking judicial relief. If the service that you require is needed but is not legally authorized by state or federal law, it may become an issue for your "action group." The action group can take the necessary steps to get a law introduced and passed so that the service will then be legally available.

There are certain "action steps" that will help attract attention quickly:

1. Make direct contact with the bureaucrat responsible for the service.

2. Write a letter to that bureaucrat stating the authority of the law authorizing the service and demand it. (Be persistent.)

3. Be miserly with the time you give bureaucrats to get the job done. If there are others who are still waiting for the service, then "progress" is not good enough. Stop whispering and start shouting. Do not be afraid to offend bureaucrats when they refuse to comply with the law.

4. If you do not receive a satisfactory response, send Xeroxed letters to the bureaucrat's superior, director of the department, to every level of governmental official who might have an effect on the agency's role, budget, and authority. Don't forget to send copies to your parent group. With each copy, enclose a brief note asking for their help.

5. If you don't get satisfactory results, resort to the media. Document evidence to show that others are having the same problem. Ask your local paper to investigate.

6. If all of the above have not brought satisfactory results, contact Protection and Advocacy, the Area Board (if you are in California), Legal Aid Society, or the Office of Civil Rights, if appropriate. If financially able, retain an attorney of your own and have him do two things: a) as your legal representative she should write a letter to the bureaucrat stating that he is in violation of the law and indicate intention to file suit; and b) have her phone to tell the bureaucrat that he is ready to file suit unless the service is provided immediately.

It is doubtful that the legal action will be necessary. The service will probably be forthcoming somewhere between your initial request and your lawyer's phone call. But if not, you should be prepared to take whatever legal recourse is applicable in order to get what you are after. (As I write this, I am awaiting the start of a class action suit which I initiated approximately 1 year ago after an unsatisfactory fair hearing and appeal).

Looking Forward

The question was recently posed: "If the world were right, what kind of living arrangement services for disabled persons would we have?" The accompanying response stated:

• There would be a variety of options, uniformly available throughout the state, for people to choose from.
• Parents and consumers would participate in making choices. They could identify, select and evaluate the services they require without fear, denial, or retaliation.
• Services would be integrated, non-stigmatizing and allow people to live in their own home.
• Services would be available without discrimination to all persons with functional disabilities.
• Services would support the family and the local community.
• Services would be innovative and use state-of-the-art technology.
• Services would be tailored to meet the needs of the individual.
• Resources would ensure continuity and stability.
• Services would be provided with sensitivity to cultural and ethnic differences.
  (California Council on Developmental Disabilities, 1981)

The recognition of the rights of consumers and their families to determine their own needs has been slow in coming. However, a number of conferences in the past year or two, such as the Consumer Unity Conference in Berkeley, California, the TASH Conference in Atlanta, the Fiesta Educativa in Los Angeles, and the Asilomar Respite Conference, have brought out ideas that have been thought and talked about for a long time. In some isolated cases, the ideas have already been put into practice such as the Parent-Case Manager role at the Los Angeles Regional Center (LARC), and the Private and Protective Advocates (PAPA) program in San Diego. Three plans which could have far-reaching significance have recently been proposed. Although the completion of each has been delayed because of budget or administrative restrictions (which I deem to be temporary), let me share these revolutionary proposals.

Although the ideal seems to be eons away, these plans, which have recently been receiving some attention, could be considered giant steps in the right direction of independent living and consumer involvement.

The Continuity Foundation

The Human Services Institute at California's Sonoma State University has developed several projects related to family support and living arrangement services for persons with severe disabilities. Their experience indicates that the number one concern of parents with disabled dependents is, "What will become of my child after we're gone or unable to oversee his/her welfare?" The long- term planning problems that face families of persons with disabilities have intensified across the past decade for a number of reasons: 1) a greater portion of the disabled population consists of elderly persons; 2) the average life span of persons with severe disabilities has increased dramatically; 3) large numbers of highly dependent persons are being relocated from state institutions to community living; 4) the average age of members of parent advocacy organizations has steadily increased; and 5) the conservative political and economic policies that are emerging in Washington D. C. threaten cutbacks in services for dependent persons (Apolloni & Roeher, 1981).

Who, then, will take final responsibility to ensure the long-term well-being of dependent persons? Who will act as their replacement parents? The current guardian and/or trust manager alternatives for families are relatives, friends, government support agencies, banks, and lawyers. These alternatives are considered inadequate for several reasons. Competing personal or organizational priorities may decrease attention given to the dependent person. Lack of specialized information on how to obtain and maintain services may result in failure to act in the dependent person's best interest. Insufficient commitment may result in an impersonal approach and delays when action is called for on behalf of the dependent person. Also, conflicts of interest (as when a government agency is expected to advocate against itself to purchase needed services) can result in inattention to the dependent person's needs.

The California Institute on Human Services proposes to work with families, private sector entities and government organizations to establish a Continuity Foundation with the following capabilities and components:

• Information and referral for long-range family planning,

• Ensurance of service continuity and quality through competent guardianship and trust management services when family members are not able to independently provide competent personal representation for a dependent family member.

• Individual and systematic advocacy to ensure that existing components of the service system fulfill their mandated roles.

• Direct periodic oversight of the life quality of beneficiaries and pressure through administrative, legislative, and judicial channels to ensure needed protections.

• A governance board which includes persons with disabilities, family members, and knowledgeable representatives from private sector business and industry.

• A role to complement not supplant the existing elements of the service system.

• A flexible design to ensure basic oversight and protection services to all subscribing families and add-on services for the dependents of families able to pay for extras.

• Family subscriptions to finance supplemental family subscriptions for add-on services, a specially designed insurance program, wills and bequests, donations, unitrusts (i.e., real estate trusts), and other trust arrangements. It will not independently administer trust funds but may be appointed as co-manager or instructed to act as an advisor to or monitor of an outside trust manager designated by the family.

• Services localized through service contracts with local voluntary and advocacy organizations, yet operated on a statewide basis.

• Subscriptions by low-income families through soliciting corporate and foundation support for needy persons and through specially designed insurance programs wherein disabled persons from low-income families are able to purchase term insurance on their parents using a small portion of their SSI payments.

The Institute is seeking support for the planning and development activities essential to establish the Continuity Foundation. While the eventual nature of the Foundation will be defined during the course of these planning and development activities, it is anticipated that the Continuity Foundation will embody the following characteristics. First, it will be funded by the private sector and will not receive income from the government-supported organizations that it will monitor. Second, it will be adequately funded to ensure life-long guardianship and trust management services for beneficiaries. Third, it will be designed so that Foundation staff may be directly appointed to serve as guardians or co-guardians along with someone else designated by the family, or appointed as advisors and monitors to a guardian designated by the family.

Continued