Skip to main content

PACER Center
952-838-9000

Champions for Children with Disabilities

Learn more >>>

Father sitting with his arms around his two sons.

young woman in graduation cap and gown, hugging her mother

daughter with arms around her mother, smiling and kissing her on the cheek

The Family as a Critical Partner in the Achievement of a Successful Employment Outcome

See the PDF version pdf icon of this resource.

Twenty-Sixth Institute on Rehabilitation Issues 2000

Prime Study Group Members

Table of Contents

Introduction

Administrator's Guide: What can administrators do to support family involvement?

Chapter One: The Role of the Consumer with a Disability

Chapter Two: The Dynamic Role of Families

Chapter Three: The Role of the VR Counselor

Chapter Four: Training Tools

Chapter Five: Resources

Appendix

References

Introduction

Goals For This Document

This document is to assist vocational rehabilitation administrators and counselors, consumers of rehabilitation services and their families, and other rehabilitation professionals, including advocacy groups, the State Rehabilitation Council, and members of service support teams, to understand how the consumer's family can be a critical partner in the achievement of successful employment outcomes. This document will also:

  1. Provide a guide to administrators to assist rehabilitation professionals in utilizing appropriately and effectively the VR consumer's family as a facilitating resource.
  2. Identify and explain both the roles of the VR counselor, consumer, and family; and provide selected skills and tools to help VR counselors establish family involvement as an important component for the consumer's eventual, quality employment outcome.
  3. Develop a training guide for vocational rehabilitation counselors and administrators that will provide an understanding of the roles and functions of the VR counselors when working with families, as well as specific tools, all of which will allow counselors to enhance their own developed skills.

These document goals will be explained in respective chapters.

Following the Introduction and Administrator's Guide, chapter 1 will focus on the role of the consumer with a disability, the dynamic role of the family, and the differences the family can make in the rehabilitation process. Chapter 2 emphasizes the role of the vocational rehabilitation counselor in engaging the consumer's family. Chapter 3 is a trainer's guide using information presented in chapters 1 and 2 and incorporates accompanying necessary tools to prepare vocational rehabilitation counselors for family inclusion. Finally, chapter 4 will identify both tools and resources for the counselor, consumer, and families. When necessary, the meaning of such selected terms as family, partnership, and collaboration will be repeated in different chapters in order to provide an important context for the subject matter. Central to all of these chapters, however, are the convictions that consumer and family directed processes empower all members of the rehabilitation team, and that partnerships between consumers, families, and rehabilitation professionals will greatly facilitate the achievement of successful employment outcomes. Successful strategies can lead to successful outcomes, which benefit consumers, families, counselors, administrators, and employers.

Introduction

The family is the natural and primary support system for the consumer. While there has been significant change in the family structure, the family is still usually involved in the critical points of the consumer's life from birth to death. Most of the major events in the consumer's life take place within the framework of the family. Disability, consequently, is a family affair. The whole family is affected by a disability in one of its members. In recent years the family as a resource in rehabilitation has received increased attention and the family's role is becoming pivotal for human service interventions (Bray, 1987; Dell Orto & Power, 2000; Kerosky, 1984; Sutton, 1985). Recent trends in service delivery approaches recognize that a consumer is part of a larger, interacting family and social system that has significant influence in the rehabilitation process (Herbert, 1989). Studies reporting the impact of family intervention have clearly demonstrated this influence on individual consumer change in areas such as enhancing independence and improving adjustment to work (Goldstein, Cohen, Thames, & Galloway, 1974; McKenna & Power, 2000). Family factors can also directly influence the mental and emotional functioning of the individual (Power & Dell Orto, 1980).

Three factors have contributed to the renewed perspective of the role of the family in rehabilitation. First, disability is not only a physiological or mental condition, but also is influenced by the person's environment. For example, positive factors existing in the family, such as continued support or the willingness to realign family roles to accommodate the consumer's needs, may facilitate progress toward rehabilitation goals. Conversely, the family may represent a constraining environment for the individual with a disability. Poor communication patterns among family members, severe economic difficulties, or unwarranted, lowered expectations for the VR consumer in the rehabilitation process can each constitute an obstacle for the VR consumer. Second, the rehabilitation counselor's awareness of such environmental influences as family roles, attitudes and expectations has contributed to successful employment outcomes. Equally, an unawareness of family strengths may cause the counselor to miss an opportunity to utilize the family as a valuable resource for enhancing a quality employment outcome. Third, there has been a shift from the traditional model emphasizing the dominant, almost exclusive role, of the rehabilitation professional for the responsibility of service delivery to a consumer directed policy which places the exploration of options and decision making on all involved parties. The Rehabilitation Amendments of 1998 have emphasized this shift.

However, as a potential resource for the counselor in assisting consumers to appropriate vocational rehabilitation goals, there has been little attention to the family in professional practice (Cottone, R., & Emener, W., 1990). Family attention has generally focused on the disability's effect on the family, rather than on the family's effect on rehabilitation. But rehabilitation counselors can be more effective if they understand how to work with the family to maximize the resources available to the person with a disability for achieving a successful outcome.

Contextual Issues

There are selected, contextual issues which suggest a foundation for understanding this document and the consumer's and professional's role in appropriately engaging the family. These issues include: (1) understanding emerging definitions of family and the meaning of partnership that will be used throughout this document; (2) identifying underlying principles in order to establish a necessary foundation for building a solid rationale for family interaction, and (3) acknowledging diversity when addressing the role of the family in the vocational rehabilitation process.

Defining Family

Societal views of family have changed in recent years. Traditional definitions of family have expanded beyond the nuclear family of parents, children, siblings, and spouses. Many individuals are part of blended or non-traditional families. An individual's biological family may not be available or relatives by blood or marriage are not the ones actually providing "family support" to the individual with a disability.

According to the Rehabilitation Services Manual (MT#31, February,1976), "Family member includes any relative by blood or marriage of a person with a disability and other individuals living in the same household with whom the handicapped individual has a close interpersonal relationship. This definition extends beyond the traditional classification of family members (people having membership in the immediate family or extended relationship by blood or marriage, such as grandfathers, grandmothers, aunts and uncles) to include those family members who have been adopted and other individuals living within the same household, where close interpersonal relationships between them and the handicapped individual characterize a family unit."

Regulations implementing Title I of the 1998 Amendments to the Rehabilitation Act provide the following definitions that relate to the role of the family in the VR process. These regulations were published by the Rehabilitation Services Administration on January 17, 2001, and become effective April 17, 2001:

(34 CFA 361.5(b)(23))Family member: for purposes of receiving vocational rehabilitation services in accordance with 361.48(i), means an individual-

  1. Who either
    1. Is a relative or guardian of an applicant or eligible individual; or
    2. Lives in the same household as an applicant or eligible individual;
  2. Who has a substantial interest in the well-being of that individual; and
  3. Whose receipt of vocational rehabilitation services is necessary to enable the applicant or eligible individual to achieve an employment outcome.

(34 CFA 361.5(b)(32)) Individual's representative means any representative chosen by an applicant or eligible individual, as appropriate, including a parent, guardian, other family member, or advocate, unless a representative has been appointed by a court to represent the individual, in which case the court-appointed representative is the individual's representative.

Even broader interpretations of the term "family" emerged from the discussion of the prime study group to include (1) an existing support system and (2) whomever the consumer identifies as family, which may or may not be the biological family.

Defining Partnership

The title of this publication expresses the role of the family as "critical partner in the achievement of a successful employment outcome". The concept of partnership is not new to the public Vocational Rehabilitation (VR) program. From the beginning a partnership existed between the federal and state governments and continues to this time. Over the years, partnership with the VR system was extended to many other professional groups, which provide services to consumers of rehabilitation services, including Community Rehabilitation Programs (CRP) and Section 121 Projects for Native Americans. Partnerships are productive relationships that benefit the vocational rehabilitation consumer because they add value to the contribution that each entity can provide separately (IRI, 1997).

It is the understanding of the Prime Study Group members that partnership is a relationship characterized by independence, respect, trust, and tolerance. Ideally, each partner acknowledges the value of the multiple perspectives each brings to the partnership of shared responsibility and accountability for decision making. As partnership evolves, each party may assume different roles. Integral to the partnership between the family, consumer, and the rehabilitation counselor is the realization that the family can be the most important source of information about the consumer. There is not a true partnership if the expertise that the consumer and family possess is not recognized and acknowledged. Recent amendments to the Rehabilitation Act in 1992 and 1998 emphasize the consumer's informed choice for his/her rehabilitation program and his/her role in the VR process.

Consumers come to the program for the primary purpose of preparing to enter a new career or resume a previous career that has been interrupted due to disability. The consumer does not pursue this alone, however, but in partnership with other people, notably family and professionals that support his/her activity in preparing for the career and maintaining it. Yet it is understood that when discussing the role of the family in the rehabilitation plan, family participation is at the discretion and informed choice of the consumer. Participation by the family is the consumer's decision.

Underlying Principles

  1. The individual with the disability takes the lead in the rehabilitation team.
  2. Informed choice by the consumer should be emphasized and extended to families. The consumer and family's autonomy and judgment should be respected.
  3. Family involvement is a dynamic process.
  4. Families can be a resource for successful employment. More constructive outcomes are achieved when professionals work together with consumers and families to achieve goals.
  5. The vocational rehabilitation counselor's role is to utilize effectively the many interwoven systems that contribute to successful employment, and to collaborate with families and consumers to identify and enhance existing strengths, and to identify and remove any constraints to effective action in reaching the VR consumer's goals.
  6. The rehabilitation professional must recognize and respect the diversity of families.
Understanding Diversity

It is becoming increasingly important that VR professionals develop an understanding of cultural diversity. It is common for a VR professional to encounter various ethnic cultures throughout their day in addition to the cultures of disability, sexual minority, the underprivileged, the youth and/or the aged. Of course, it is unrealistic to expect that each VR agency has each culture represented in every office, so we seek to develop a staff of VR professionals who have "cultural sensitivity."

When we apply this concept to families of VR consumers, we quickly realize that every family has its own unique way of meeting its needs and supporting its survival. Each family adapts differently to a family member's disability. Each family, in this way, has its own culture. While the VR professional cannot realistically be expected to understand all of the particulars of a family's culture, the goals must be to recognize how the family system/culture works and to appreciate the uniqueness and customs of each.

It is within the context of recognition, acceptance, and appreciation for the vast differences of culture that this Prime Study Group approaches the issues of diversity. Services should be provided for in a manner which emphasizes the whole person and involves the family in a supportive and holistic vocational rehabilitation process. Such provision requires the rehabilitation counselor to have a broad paintbrush with which to paint flexibility, respect, and acceptance.

^ Back to Top ^

Administrator's Guide

This guide presents information that will help administrators develop the resources necessary for their agency to support positive family partnership. As an administrator committed to family involvement, your leadership is essential. For families to be recognized for their critical contributions to successful employment outcomes, and for the VR system to facilitate family involvement in the VR process, it is necessary for the administrator to embrace the concept and strongly advocate for family inclusion.

Benefit of Family Partnerships to Administration

The paradigm shift is well underway in the method people with disabilities receive rehabilitation services. The trend is to no longer focus solely on the consumer who goes alone through the rehabilitation service delivery system. Rehabilitation professionals and other human service providers realize that by involving family participation rehabilitation success is enhanced. Because of the current shift in thinking, as well as beginning organizational changes to facilitate family partnerships between the consumer and Rehabilitation Administration, families are considered critical partners. Along with the rehabilitation professional and other human service providers they are ensuring the success of people with disabilities in achieving employment outcomes.

The administrator's role in fostering productive partnerships with families is critical. Administrators at all levels are recognized as partners with consumers, counselors, family members and employers in achieving the goals of the VR program. Administrators as leaders set the tone and policy for the provision of services to consumers and family members in achieving a successful outcome. Funds are allocated, by administrators, to purchase services enabling the consumer to pursue and achieve the outcome. Administrators provide the counselors with the tools and staff assistance necessary to develop and support the family as a critical partner. Administrators work with employers to provide career opportunities to consumers who are prepared to assume their role in the workforce.

Family partnerships can assist administrators to achieve program goals, and are beneficial to State programs in the following ways:

Families provide increased awareness of the needs and strengths of the consumer. Management will have a pulse on how effectively the consumer is able to negotiate the rehabilitation system. Communication with family members can enhance effective communication with consumers during the rehabilitation process. Such communication can contribute to family and consumer satisfaction with the rehabilitation program and appeals may be reduced as a result. Administration can also streamline processes to increase access to rehabilitation services.

Families provide support for the vocational rehabilitation program. Families who are partners and stakeholders will have intimate knowledge of the program and a vested interest in the need for the program to "work" for the family member. Families can assist in promoting the public rehabilitation program by being involved in advocacy roles and developing political awareness.

Through increased family participation administrators can become alert to consumer and family needs, which in turn, can develop budget and program initiatives that include expansion of services to family members. Public forums, with input from family members, are an integral part of the State plan development process and enable individuals to comment on rehabilitation initiatives. Ongoing customer surveys are other ways families can share their experiences with administration.

Families help improve service to diverse and underserved populations, which is a goal for administrators. Through program initiatives, which include staffing and personnel, marketing and outreach activities can be developed to connect with minority individuals and their families.

With family participation, an increase in the number of job opportunities may result. A report of a June 1996 study by the Center on Promoting Employment (RRTC Boston) "demonstrates that family members play crucial roles not only in career preparation, but in actual job search efforts. Young adults both with and without disabilities find that using their personal network of relatives, friends, or neighbors is the most effective way to find a job" (Point of Departure, TATRA 1996).

The value of the family's participation in the vocational rehabilitation process cannot be underestimated. As noted in Point of Departure, families can help to:

  • Identify a family member's interests and strengths
  • Streamline the assessment process by providing existing documentation
  • Collaborate in creative problem-solving
  • Participate in their family member's job search by helping to connect them with potential employers through their personal network.

Sometime disability within the family may present numerous challenges that may affect the achievement of a successful outcome. Families are subject to many demands as they address the multiple needs of the consumer. Services are available to support family members in addressing many of these challenges and rehabilitation professionals should be aware of these services and inform the family of their availability to encourage positive partnership.

It is helpful for administrators and counseling professionals to understand the complexity of the family role. The inter-relationships and processes within the family are most at risk and more often challenged and altered when a family member becomes disabled (Ziegler, 1987). Historically, the role of the family has not been fully understood because attention by various programs was focused exclusively on the consumer. Cultural factors may also have impeded past interaction with professionals. Because of traditional service delivery models some families may not have felt empowered or sufficiently knowledgeable about advocacy to understand or accept partnership. Some families have negative feelings about interacting with government agencies because of previous negative experience. Yet, "Families want professionals to work with them and to provide them with advice, not run their lives or make decisions for them." (Morrone et al).

Rehabilitation legislation has emphasized the role of the family in the vocational rehabilitation process, and a new relationship with families as partners can influence operations and planning. It can also result in benefits for VR professionals, consumers and employers. Some of these benefits are identified in the following section.

VR Professional

In a 1984 article, Tuck discussed the roles of the vocational rehabilitation counselor, including case management, disability evaluator, family counselor, legal expert, motivator, customer advocate, placement specialist, rehabilitation liaison, social re-enforcer, medical translator, outpatient social worker, and medical manager. The shifts from the traditional service model to a consumer directed policy have far reaching implications for individuals with disabilities, their families, and rehabilitation professionals. Counselors benefit in the following ways with increased family participation.

In addition to the consumer, the family is the most important source of information about the consumer. Family knowledge of the consumer's life, abilities, goals and objectives should be taken into consideration during the development of a collaborative Individualized Plan for Employment (IPE). At the center of this plan is the consumer's assessment of what he/she is going to do with his/her life. In some cases, the VR counselor may be able to help families identify areas of a family relationship that may impede the achievement of the outcome and offer recommendations to the consumer and family for appropriate services. Families are encouraged and assisted in developing the partnership and understanding their role. The activity of the partnership is focused on the employment goals of the consumer.

Consumer model. The rehabilitation counselor will no longer expect to assume the all-encompassing role of being all things to all people. The consumer-directed model of rehabilitation places the responsibility for exploration of options and decision-making on all parties involved. Family partnerships lead to increased communication between the people with the disability, their family member, the rehabilitation professional and other human service providers. It also contributes to the family's awareness of their rights and resources.

Elevates awareness of stereotyping. Holes and Karst (1990) discussed the impact of disability myths or stereotypes on the development of VR consumer/family/counselor relationships. A counselor who possesses mythical attitudes may inadvertently communicate them to the consumer. Family input can help rehabilitation professionals avoid these stereotypes by discussing variables and barriers to employment in an environment that recognizes that family members have expert information that can promote a successful rehabilitation experience. Nurturing this kind of atmosphere is to the benefit of the rehabilitation professional in guiding the individuals to an employment outcome.

Knowledgeable family participants. The family can reinforce adherence to treatment and cooperation with the rehabilitation plan. The family can with competence and knowledge advocate, assist, and support the needs of the family member in guiding the consumer to a successful employment outcome.

Consumer

The consumer, the focus of rehabilitation efforts, may stand to gain by having a network of partners and stakeholders that includes the family to support their vocational rehabilitation initiatives. A recent study reported in Point of Departure (1996) found that the kind of support friends and family usually provided were ideas about the type of work an individual could perform, suggestions about where to look for a job, and providing transportation. At the same time, this report also found only a small percentage of families (25%) was perceived as being involved in the job search of their consumer.

Effective family involvement will result in the following benefits to the consumer:

  • Consumers benefit from the expertise their families bring to the process, their commitment to their welfare, and the personal family networks that lead to job opportunities.
  • The family becomes confident participants in the rehabilitation process. As families are engaged in the rehabilitation process they can provide more focused and effective supports to consumers.
  • The family and consumer recognize that quality of life issues for all family members affect the individual with the disability. Family members, as well as the individual with a disability, may find it necessary to seek outside social and recreational activities to remain healthy.
  • With positive family involvement, consumers may be more inclined to believe that improvement is likely and that they can accomplish their employment goals. Self- esteem of the consumer is more likely to exist when family members are participants in supporting the rehabilitation initiatives.
Employer

Many individuals with disabilities have serious difficulties in obtaining employment. For those with severe disabilities, the rate of unemployment is very high. The job market now and into the foreseeable future is one in which the most important resources workers possess are their workplace skills and their ability to learn new skills (IRI May 1999). The individual with a disability will need knowledge, self-advocacy and self-awareness skills to negotiate in today's labor market. The employer benefits from a family partnership in the following ways:

Employer expectations. Employers can confidently employ individuals with a disability when individuals have the ability and a range of resources to meet his/her workplace needs, for example, in the area of transportation.

Untapped workforce. Families can assist employers in discovering a valuable resource for filling vacant positions with qualified individuals who come to the table with knowledge, skill and resources to support their employment goals.

The family can provide assistance to the consumer in overcoming obstacles to job retention.

Administrative Strategy for Family Participation

The issues presented in this guide for administrators require the development and implementation of a strategy incorporating several recommended activities that address the involvement of families in the vocational rehabilitation program. The activities also provide support to counseling professionals for understanding the potential role of the family in the achievement of the consumer's successful outcome and for putting these ideas into practice. This strategy recognizes that the choice for family involvement is the consumer's.

Administrative strategy is designed to address understanding, listening, and communication as primary tools in the development and maintenance of family involvement.

Administrators encourage the development of family partnerships by emphasizing values, such as respect, shared responsibility, and autonomy, reducing rules that may inhibit effective communication, and encouraging risk-taking. Values are emphasized when the staff is trained to encourage family participation in the rehabilitation program for the consumer and organizational activities are directed toward this objective. Administrators are encouraged to allow for risk-taking by staff as the consumer pursues the vocational objective with the family partners without the overlay of uncertainty about the outcome (Marrone, Helm, & Van Geider, no date). Flexible program design is necessary to address the uniqueness of each consumer rather than making the person "fit" the program (Bradley, & Bersani, 1990). Several activities are now recommended as components of the strategy for partnership.

Program Evaluation

It will be helpful to initiate a program evaluation study focusing on a needs assessment that surveys consumers, families and counselors. The results will be valuable in determining a course of action for the agency in developing and maintaining effective partnerships. Training needs, improved communication, effective policies and family-oriented programs may be identified as issues to be addressed.

Dunst, Trivette et al. (1993) point out that administrators and professionals encounter many challenges in assuring family support. Several points have application to partnership in vocational rehabilitation and are modified here. They provide a suggested structure for evaluation and analysis of family partnerships.

Does the program activity or practice employ consumer-driven approaches to identifying family needs as opposed to using professionally driven and prescriptive practices?

Does the program activity or practice provide the consumer in conjunction with the family the necessary information to make informed, competent decisions as opposed to having professionals make decisions for the consumer?

Does the program activity or practice promote collaboration and partnerships between consumers, families and professionals rather than employ paternalistic practices for building resource networks for meeting needs?

Are families involved in training and policy making, especially from the beginning of training and policy development?

Does the program activity or practice provide resources and supports to the consumer and family members in ways that are flexible, individualized, person-centered and family-centered rather than provide services to families at the convenience of programs and professionals?

Does the program activity or practice emphasize the delivery of supports and resources in the communities in which the families live rather than provide services primarily in centralized locations?

Does the program activity or practice promote adoption of empowering the consumer as opposed to paternalistic help-giving practices?

Early Contact and Planning

Early contact and planning by counseling professionals with consumers and interaction with families are ways to assess the family dynamic for involvement. For youth, transitioning programs provide an opportunity for early contact and communication on the part of counselors. Future programming is developed for the transitioning student, which may incorporate referral to a VR program. Encouraging school personnel to include the counselor in the Individual Education Plan (IEP) staffing gives the counselor an early opportunity to initiate contact with the family.

Staffing at hospitals and rehabilitation centers for people who become disabled are early contact opportunities for counselors to meet with families and medical personnel for familiarization with the VR program. This contact, close to the onset of disability, encourages the consumer and family to participate in the VR program when the consumer is ready.

Modification of several practices enumerated by McGonigel (1991) are useful guidelines for understanding the value of early contact and planning. Early contact respects the consumer's choice for family involvement.

Each family has its own structure, roles, values, beliefs, and coping styles. Respect for and acceptance of this diversity is a cornerstone of family-centered involvement.

All contact must respect the racial, ethnic, cultural and socioeconomic diversity of consumers and families.

Respect for family autonomy, independence, and decision-making means that families must be able to choose the level and nature of early contact that is comfortable for them.

Family/professional collaboration and partnerships are the keys to family-centered early involvement.

Early contact services should be flexible, accessible, and responsive to family-identified needs.

No single agency or discipline can meet the diverse and complex needs of consumers and families. Upon early contact, a team approach to planning and implementation of services leading to a successful outcome is necessary.

Communication

Effective communication is essential to the partnership. Focus groups are effective vehicles for communicating and discussing issues. They provide the opportunity for consumers, family members, counselors, representatives of community programs, family groups and employers to come together for the benefit of the consumer to listen and share their knowledge about the consumer. The focus sessions can be facilitated by administrators on either a state-wide or local basis. It is important to have the involvement of employers who are in a position to explain current occupational demands and trends to the participants. Of particular value is the culturally diverse composition of the focus group, which gives families the opportunity to share similar experiences with other families.

Communicating information about the program to consumers and family members can take several forms. Printed materials in accessible format can be developed and made available. Video productions, also in accessible format, can be developed and shared with community programs, schools, employers and other entities that can assist the families in understanding the VR program and its objectives. Orientation programs offered by professional staff for new consumers and families highlight the role of partnership with families in the rehabilitation of the consumer.

Policies

A clearly defined policy concerning services to family members should be available to professionals, consumers, and families. The Rehabilitation Act provides the authority to State VR agencies to provide VR services to family members of an applicant or individual eligible for VR services, if; the services are necessary to enable the individual to achieve an employment outcome. (Section 103(a)(17) of the Act and 34 CFR 361.48(i)). Policies should also outline services available to families that reflect the partnership of the public VR program in the Workforce Investment system and its benefit to the consumer and his/her family. According to Morrone et al, families need to be provided with emotional and tangible supports to encourage and enable their involvement in employment planning and services for the consumer. What is necessary to "Support the Supporters?" The support of family members, counselors, and administrators is necessary.

Training

Training opportunities for professional staff and families on the subject of family partnerships is an approach to increase family involvement and should be included in the training plan. Training needs in specific areas are identified by the evaluation study. Ginter (1996) observes that the rehabilitation counselor through training and experience has a wealth of information regarding disabilities. Counselors already interact with many systems involved in the consumers' lives including workplaces, schools, community agencies, hospitals and state and federal agencies. Additionally the rehabilitation counselors who understand the family context of rehabilitation are more likely to experience greater progress with the consumers.

University programs, RSA-funded Parent Information and Training projects, and community social programs are additional approaches for implementing the training plan. Training presents an opportunity to discuss current agency policy on family involvement. The program evaluation study will identify areas for professional staff training with an emphasis on training for newly hired professionals. If administrators are advising university programs in Rehabilitation Counseling, a course in family interventions is recommended. An example is the course offered in the Vocational Rehabilitation graduate program at the University of Medicine and Dentistry of New Jersey (UMDNJ). The continuous collection and dissemination of case studies demonstrating both positive and negative effects of family partnership is a valuable training tool for counselors.

Families also can benefit from training to understand their role as partners and advocates. The Technical Assistance about Transition and the Rehabilitation Act (TATRA) project is a major source of assistance for this activity. The TATRA project is funded by the RSA to provide assistance to projects that are part of a RSA initiative providing training to families. TATRA is a project of PACER Center in Minneapolis (www. pacer.org). The RSA funded parent training projects inform young adults with disabilities and their families about transition, vocational rehabilitation and independent living services and related laws in a limited number of states.

Each family has a unique dynamic, which will have an effect on the outcome for the consumer. As Singer and Powers (1993) write, "Trusting, working relationships rarely sprout fully grown out of an initial encounter. They unfold over time. As a relationship grows, the individuals within it can influence its development. Some relationships evolve in a more or less typical fashion and respond to the normal amount of care and attention. Others evolve in less typical ways and need more careful attention, a more carefully controlled environment, and more skilled tending to mature into full working relationships". Incorporating these beliefs into counselor training programs provides a foundation for an effective outcome.

State Rehabilitation Council

The Rehabilitation Act Amendments of 1998 mandate the membership of at least one representative of a parent training and information center funded by the Office of Special Education Programs (OSEP) on the State Rehabilitation Council (SRC). This brings the perspective of family members to the attention of the SRC, which provides to VR administrators input on agency policy affecting consumers. The needs of the family and consumer are best served when families are represented on the various agency committees and councils.

"Agencies cannot be truly responsive to the needs of families and consumers if they are unwilling or unable to solicit their input. In addition, service providers cannot fully assess the impact of their programs unless they actively involve families and consumers in monitoring and evaluation. Only with collaboration and cooperation can agency providers, families, and consumers help each other. Two ways in which this collaboration is possible are family/consumer monitoring of services and programs and family/consumer representation on advisory committees" (Bradley & Bersani, 1990).

Partnership with the Employer Community

The role of employers as partners with consumers, families and counselors cannot be underestimated, especially in the Workforce Investment environment. The membership of administrators on boards of state and local business organizations where employers are significantly represented may be conducive to the development of career opportunities for consumers. A VR presence on Local Workforce Investment Boards (LWIB) along with representation of family members on the LWIB may assure that the employment needs of people with disabilities will be addressed in a specific geographic area. Presentations to state or local business associations, the State Workforce Investment Board (SWIB), Chambers of Commerce, Rotary Clubs or Lions Clubs involving administrators, family representatives and counseling professionals provide a forum for a mutual understanding of the career needs of consumers.

Another group of employers that is often overlooked is found among the family members of persons with disabilities: the "personal network." Family members are employed at all levels of private corporations and government agencies. Given their understanding of the employment objectives of persons with disabilities, they are positioned to recommend the employment of persons with disabilities for various positions in the company or agency. They are a valuable resource available to rehabilitation professionals for the design of specific employment tailored to the unique requirements of the consumer. This partnership should be encouraged and developed with a family member who may also offer employment opportunities.

Advocacy by Administrators

Advocacy and support by administrators for national studies that assess the family partnership is necessary. Effective studies may demonstrate the need for legislative and regulatory change and provide the impetus for increased services to families through the funding of new projects or increased funding for existing projects.

Conclusion

This recommended strategy provides opportunities to develop and strengthen the relationship of the family to the consumer and the counselors providing services to the consumer with the objective of an appropriate career. A strong, respectful relationship enhances the quality of the career for the consumer and increases the effectiveness of family supports in assisting the consumer to maintain the career. The ultimate outcome will be a satisfied consumer who has achieved a successful employment outcome with the support of family members, counselors, and administrators.

^ Back to Top ^

Chapter One: The Role of the Consumer with a Disability

Although the focus of this manual is family involvement in the vocational rehabilitation process, the purpose of having family members actively involved is to help the consumer reach his or her employment and independent living goals and maintain them over time. The role of the consumer and the consumer's employment goals remain central. The professional's role in relation to family members is to support and strengthen their ability to support the individual with a disability in reaching his or her goals and to enhance the quality of employment outcomes.

Informed Choice

The importance of informed choice and self-determination for individuals with disabilities participating in the VR program is stressed throughout the Rehabilitation Act, as amended both in 1992 and 1998. The law makes clear the primacy of the individual with the disability's role within the rehabilitation team. "It is the policy of the United States that all programs, projects and activities receiving assistance under this Act shall be carried out in a manner consistent with the principles of respect for individual dignity, personal responsibility, self-determination, and pursuit of meaningful careers, based on informed choice, of individuals with disabilities" (Rehabilitation Act as amended in 1998 Sec. 2(c)(1)).

Language expressing strong support for family involvement in the vocational rehabilitation process is also found throughout the Rehabilitation Act. The statement "Families and other natural supports can play important roles in the success of a vocational rehabilitation program," for example, is prominent as an underlying principle of vocational rehabilitation policy (Section 100(a)(3)(D)). Such statements, however, are always qualified by the language: "if the individual with a disability involved requests, desires, or needs such supports."

Vocational rehabilitation counselors must inform individuals with disabilities of their rights and responsibilities as a consumer of VR services. Once the individual has a good understanding of their rights, he or she can become an effective leader of their plan. The way each individual with a disability exercises responsibility and leadership on the rehabilitation team will vary dependent upon the age, type of disability and life-status of the individual. For individuals of legal age, the responsibility for case advocacy and progress is theirs to use or delegate. One right they may choose to exercise is to invite family members to join their rehabilitation team. The 1998 Rehabilitation Act Code of Federal Regulations states that the individual with a disability can designate other persons they would like invited into the process - "any representative chosen by an applicant or eligible individual, including a parent, guardian, other family member or advocate, unless a representative has been appointed by a court." (34 CFR 361.5(b)(32). As Judith Heumann, former Assistant Secretary of the US Office of Special Education and Rehabilitative Services under President Clinton, has said, "Independent living does not mean doing things yourself. It means having control over what's being done."

Naturally some consumers do not have families, or their families are unable to participate in the VR process. Some consumers may also choose to exclude their families from the process. Consumers with disabilities who do invite family members to participate, however, should not turn over decision-making authority to their family members by default. If the individual is legally able to negotiate services and plan goals, the consumer should direct the amount of family involvement. It is the individual with a disability's responsibility to be an active participant, to express his/her desires, identify goals and advocate for his/her own interests. This basic principle is no different for consumers with significant cognitive disabilities. However, it is the responsibility of VR professionals to facilitate the process and to provide supports to consumers who need them that will enable them to be "active and full partners in the vocational rehabilitation process, making meaningful and informed choices" (Rehabilitation Act, Sections 100(a)(3)(C) and 102(d)(1)).

Balancing an individual's right to privacy and confidentiality with a family's need and right to know relevant information, however, may not always be simple. Generally, if an individual with a disability is of the age-of-majority (age 18 in most states), the consumer chooses the family members or other individuals that they would like to have included in the planning and implementation of their IPE. Adult consumers must give permission to share information with family members by signing an information release. If an individual is below the age-of-majority, a parent or guardian is legally required to be included in the process. In some cases, due to the nature of the disability, family members have been designated by the courts as guardians even after the age-of-majority. In situations where a family member has legal guardianship, family opinions are those that legally need to drive the decision-making and to which professionals should ultimately adhere.

Guardianship or Conservatorship Issues

The law presumes that an adult 18 years or older is capable of managing his or her own affairs. Guardianship is a legal relationship between a person over the age of 18 whose disability causes "incompetency" and a competent adult. Conservatorship is term that refers to a limited form of guardianship. Incompetency has to do with a person's ability to make informed choice, or with the risk of harm that may result from an individual's inability to manage their affairs or provide for themselves. The primary test for determining the need for guardianship focuses on one's ability to make decisions, and to communicate the decisions once made.

Guardians are appointed by the court to manage the affairs of an adult only when it can be demonstrated that the person does not have the capacity to make or communicate responsible decisions concerning personal or financial matters. In this relationship, the guardian is given the right to make decisions on behalf of the person with a disability. The areas of decision-making on which most guardianships are focused are living conditions, medical care, vocational and educational services, ancillary professional services, caring for dependents, and managing finances.

Each state has specific laws that govern guardianship proceedings and guardianship activities. Mental illness, developmental disability, physical incapacity, chronic intoxication or advanced age are identified by various state laws as the basis for lack of decisional capacity. However, a developmental disability or mental illness is not, by itself, sufficient reason to declare someone incompetent. Nor may a family member assume guardianship because a person acts or uses money in a way that may seem odd to someone else. A court must find the person incapable of managing his or her financial affairs or making informed choices. A guardian's authority is limited to those areas of decision-making for which there is evidence to indicate that a person is incapacitated. Some persons are able to make responsible decisions in some, but not all, areas of their lives. (National Guardianship Association, 1999)

Consumer Needs Drive the Process

Family members will involve themselves in the vocational rehabilitation process and often take on additional responsibilities in order to allow family members with a disability to focus on achieving steps that bring them closer to their employment and independent living goals. The type and amount of family support, whether it is physical, emotional, financial or spiritual, will depend on the current needs of the consumer and likely will change throughout the rehabilitation process. For instance, following an accident, a family member may take initial responsibility for filing insurance claims but will step back from such activities later when the consumer can return attention to financial matters.

Family support can also be influenced by the socioeconomic status of the consumer and the family. If the family is given responsibility for providing an accessible home environment, follow-up medical care, and transportation, but does not have adequate resources to follow through, a consumer's chances for success can be compromised. Services and support provided to the individual are primary, but recognition of the need to support the family must accompany the rehabilitation process.

Under the Rehabilitation Act, VR services can be purchased for "relatives, guardians or individuals in the same household who have a substantial interest in the well being of the individual to the extent that they are necessary to assist the individual achieve our employment outcome. (Section 103(a)(17))" The next sections of this manual include more in-depth discussions of family roles, the range of family contributions to vocational rehabilitation, and ways in which VR counselors can support families.

However, no matter how much support a family provides, it is the individual with a disability who must ultimately take full advantage of opportunities as they arise. A key responsibility of the consumer must be to focus on their goals and invest themselves in the vocational rehabilitation process. An essential part of this process is that the person with the disability must learn about their disability and the accommodations they need.

It's Not a One Way Street

Consumers can support family members by acknowledging the help they receive and by letting their family know that their help is appreciated. Consumers need to understand the limitations of family members, and to give them permission to give up responsibilities that they are no longer able to sustain. Another way consumers can support their family members is to "lighten their load" by becoming familiar with and using other available support systems outside of the family, whether they are natural supports or supports available through formal systems. While eligible for VR services, for example, consumers should fully utilize the expertise of their vocational rehabilitation counselor whose professional knowledge of training, postsecondary, and job accommodation resources is broader than their family members.

Consumer Family Conflicts

There will be consumers who are reluctant to have family members participate. VR counselors can encourage consumers to talk with their family about their interests, where they want to work and live, what they want for their future. Consumers who share their goals and dreams with family members may then feel more comfortable enlisting their support as they work toward accomplishing them. Such discussions may also help family members become more supportive and invested in the process. VR counselors might advise consumers of potential benefits that can result from family involvement and may want to point out that individuals who do not have the support of family can be at greater risk of dropping out of the process (Brofenbrenner, 1976; Hall, deFur & Taymans, 1995; Gallivan-Fenlon, 1994; Hill, Wehman, Hill & Goodall, 1985; Johnson and Rusch, 1993; Johnson & Thompson, 1989; Lakin & Bruininks, 1985; Rumberger, Ghatak, Poulos, Ritter & Dornbusch, 1990; Statistical Profile of Special Education in the United States, 1994; Way & Rossmann, 1996).

It should be noted, however, that consumers might have valid reasons for not wanting to involve family members. Examples might include individuals who simply do not have positive relationships with members of their family, who have been self sufficient for years, who have profound disagreements with family about their capacity for employment or basic employment goals, or who need to make decisions away from the influence of a domineering family member. For some such a decision might be an important statement of independence. Certainly it must be also acknowledged there are instances of family abuse. Research shows that youth with disabilities are at increased risk for abuse, unfortunately often at the hands of family members (Jones, 1995; National Center on Child Abuse and Neglect, 1993).

When conflicts arise between consumers and their family members, counselors must advocate for a course of action that best serves the interests of the consumer. However, it is vital that family concerns are recognized and explored. It can be helpful for consumers to understand the roots of any concerns their family members have expressed. Are they based on past experiences or generalized fears and worries? It is important that these issues are discussed. An atmosphere of openness and honesty allows concerns to be discussed comfortably. Skilled counselors can help all parties fully understand the implications of their differing perspectives (Marrone, Helm & Van Gelder, no date). All parties can then either agree and act upon their agreement, or disagree and continue to negotiate.

Developing Outside Supports

For some consumers, it may be difficult to know when to ask for help, for others, it may be difficult to know when to take the initiative to do things themselves. However, all consumers need to learn what supports exist for them outside of their family, how to develop their own networks and natural supports, and how to use systems. Consumers can take responsibility for getting out of the house and into the community, seeking out peers with disabilities and locating other resources. Ultimately, both consumers and family members will be reassured when the consumer begins to develop skills that will allow them to find and maintain employment and life in their community when family members are no longer able to provide significant supports.

Giving Back

Consumers who have benefited from vocational rehabilitation and live and work in the community may also want to consider how they can open the doors for others with disabilities. Providing peer support to other individuals with disabilities is one means of doing so. Individuals might also choose to become involved in disability or advocacy organizations in their community. State VR agencies also welcome input from individuals who have used their services at public forums and often seek volunteers to serve on committees.

^ Back to Top ^

Chapter Two: The Dynamic Role of Families

Traditionally, the focus of vocational rehabilitation has been almost exclusively on the individual with a disability. A person's family has generally not been included as an integral part of either the assessment process or in the development and implementation of a person's individualized employment plan. In fact, tension between rehabilitation counselors and families has often been noted. However, a greater awareness and appreciation of the importance of family involvement in the vocational rehabilitation process is emerging in the field today.

Recent years have seen a great deal of change in attitudes about disabilities and in disability policy and practices. There is a shifting of basic principles away from the medical model of disability to one that is more culturally based. A new perspective now promotes families as "the experts", with professionals assuming more of a consulting role. These changes have resulted in new relationships between families and professionals.

Family involvement in both special education and vocational rehabilitation systems is recognized as best practice (Bailey, Buysse, Smith & Elam, 1992; Goldberg & McDonald, 1996; Hall, deFur & Taymans 1995; Hosack & Malkmus, 1992; Kohler, DeStefano, Wermuth, Grayson & McGinty, 1994; Lankard, 1993; Turnbull & Turnbull, 1991). Family members provide the most long-term and important support in a person's life and can make critical contributions to successful employment outcomes for individuals with disabilities.

The Rehabilitation Act reflects these changes and specifically cites the importance of family and other natural supports as one of the fundamental principles shaping vocational rehabilitation policy (Section 100(a)(3)(D)). Recent amendments to the Rehabilitation Act give greater emphasis to the role of families, authorize funding for family training on vocational rehabilitation, and enhance opportunity for family members to be involved in the rehabilitation process.

However, real-life day-to-day practice has not caught up with these policy changes, philosophical shifts and recommendations. Families of individuals with disabilities remain under-utilized by vocational rehabilitation professionals. It is interesting to note that although involvement of family members is expected in medical rehabilitation this expectation does not carry over to vocational rehabilitation. The VR system doesn't seem to start with the same assumption that families make critically important contributions to an individual's rehabilitation. However, a new day is dawning. VR counselors see evidence of the value of family support in their ongoing work with individuals with disabilities. A generation of parents familiar with the mandate for parent involvement in the special education system is asking to be included as partners in the vocational rehabilitation process. Moreover, as state vocational rehabilitation agencies implement new "order of selection" policies serving individuals with the most significant disabilities first, VR counselors are encountering an increasing number of individuals with significant physical and cognitive disabilities who require complex supports and for whom family involvement is essential.

Societal views of family have changed in recent years. Traditional definitions of family have expanded beyond the nuclear family of parents, children, siblings, and spouses. Many individuals are part of blended or non-traditional families. In addition, an individual's biological family may not be available, or relatives by blood or marriage are not the ones actually providing "family support" to the individual with a disability. Distantly related individuals, friends, neighbors, or coworkers can become significant natural supports for individuals with disabilities working and living in their communities.

Continuum of Family Involvement

An underlying premise of this manual is that families can make valuable contributions to the vocational rehabilitation process leading to successful employment outcomes. Vocational rehabilitation counselors should take time to explore the potential for positive family involvement and see families as a resource for the consumer before assuming otherwise. Focusing on the strengths of families does not ignore the fact that vocational rehabilitation counselors will encounter challenging families. However, it is simplistic to think of the family's ability to cope with stress in terms of whether they are "healthy" or "unhealthy." Just as there is a wide diversity among families, families will vary in their capacity to support their family member with a disability. One must acknowledge that disability is not the only factor shaping the way a family interacts. The degree of family involvement is a reflection of each unique family system reflecting cultural and socioeconomic background, social issues, financial issues, individual family values and personal choice.

Another premise of this manual is that family involvement is a dynamic process. There is a continuum of family involvement encountered by vocational rehabilitation counselors - from uninvolved to very involved. Extremes of the spectrum may reflect more complex situations. However, we must be careful not to label challenging families too quickly. What at first glance may appear to be uncooperativeness could, in fact, represent difficulties attending meetings because of conflicting work schedules or problems securing childcare. Families from some cultural traditions may defer to professionals out of respect, which could be mistakenly perceived as a lack of involvement. Unsupportive behavior could also be based on legitimate concerns that need to be addressed. Families may be afraid of losing benefits upon which they have come to rely, or concerned that the consumer will become more vulnerable to violence or exploitation if they live away from home, or work in the community. They may not be supportive because of low expectations, a lack of knowledge, or any number of other issues that could be addressed through education, careful planning or corrective action.

Even so, it is unrealistic to expect all families to participate at the same level. Limited participation can reflect personal choice. Passive participation should not be labeled as uncaring and counselors should not pressure families to assume preconceived, culturally unfamiliar or uncomfortable participatory roles.

However, it is also true that limited family involvement could be a result of a lack of information about available choices and options. Families need to know about their choices, options, and rights. Many families are not knowledgeable in areas that could affect their ability to choose a more active role. When family members do not participate fully, vocational rehabilitation counselors should ensure it is not because of unpreparedness or a lack of information, but is a truly free and informed choice. There will be times in which a family will not be willing or able to be involved, but there are ways counselors can encourage family involvement. Generally, family members will be much more likely to participate if they feel their participation is valued.

The continuum of family involvement can be used to represent not only the range of differences between families, but also the changing dynamics of an individual family. Family relationships and the degree to which family members are involved in the lives of one other can change over time. Families may assume greater or lesser roles in the lives of their family member as that individual matures or masters new skills, experiences setbacks, or in response to other responsibilities and stresses in their lives that require time and attention. Families deal with multiple priorities that at times must take precedence over working with professionals on behalf of their family member with a disability.

Family members can be an important source of support for people with disabilities of all ages; however, transition-age youth are one age group where vocational rehabilitation counselors can expect to see a high amount of parent and family involvement in the vocational rehabilitation process. Parents provide valuable guidance and support for most young adults, with or without disabilities. However, many students with disabilities have had limited opportunities to go through early stages of career development and may be less ready than students without disabilities to make critical decisions at the end of high school (Syzmanksi, 1998). In addition, many parents of transition-age youth have been involved participants in special education, which expects parent and family involvement.

The type and severity of the family member's disability can also affect family inter-relationships. Progressive disabilities require families to continually adapt and change roles. Families can become exhausted from acting as primary caregiver to individuals with spinal cord injury or other chronic medical conditions, or from stresses resulting from a family member's traumatic brain injury or psychiatric disabilities. Families of individuals with cognitive disabilities may assume lifelong roles as guardians and conservators.

Age of onset of disability can also affect family relationships and family involvement. Parents may be more protective of sons and daughters with congenital disabilities in contrast to family members of individuals who acquire a disability after they reach adulthood and have already demonstrated independence. Likewise, an individual's prognosis will affect family relationships. Illnesses that are expected to shorten life can be very difficult for a family to deal with. Families in this situation may want to insulate the person with the disability from stress that results from assuming normal responsibilities. The position of the person in the family system also affects a family's ability to involve themselves in the VR process. Families may be challenged by the difficulty of adjusting to complex reorganizations in lifestyle, role, self-perception, economic security and belief systems.

Even when an individual's disability essentially remains unchanged over a long period of time, a family must continually adjust to the impact of disability on their lives as their family member moves through life's milestones. Each rite of passage presents new challenges and corresponding stress - whether advancing through school, driving a car, applying for college, finding employment, moving away from home, getting married, or becoming new parents and grandparents. Many significant milestones can coincide with an individual's vocational rehabilitation progress. As individuals with disabilities and their families face each situation, they must come to terms with the impact of disability on their lives anew. Family relationships may be strengthened, or individuals may be struggling with their own adjustment, making themselves less available to others.

Culturally Diverse Families

Many cultures are represented in US society, and cultural views about independence, time, gender roles, family roles, work, health, illness and disability vary. Cultural traditions can have a significant impact on a family's expectations of their family member with a disability as well their interactions with professionals. Likewise, traditions can shape an individual's vocational goals and decision-making in ways that may run counter to mainstream values. For example, an emphasis on the interdependence of the family group is the norm in many cultures and may lead consumers to choices that make his or her needs secondary to family considerations - a course in opposition to the high priority Americans have historically placed on individualism. If such decisions reflect the informed choice of a consumer, they should be respected instead of opposed by counselors.

Individuals from diverse cultural backgrounds may communicate in languages other than English. It is important to communicate and share information with a family (as well as the consumer) in their preferred language. Such communication allows for family input that can lead to a more accurate assessment of a consumer, by clarifying misconceptions about a person's level of functioning that may be based on differing cultural background, limited English language skills, or other gaps in information. The Rehabilitation Act specifically states that a copy of the consumer's IPE shall be provided to the individual and, when appropriate, to the individual's family or other chosen representative in writing and in their "native language or mode of communication" (Rehabilitation Act Amendments of 1998, Sec. 102(b)(1)).

Ideally, VR offices should reflect the diversity of the populations they serve and have multilingual and bicultural counselors available to help communicate with families from diverse cultural communities and put them at ease. The current shortage of qualified staff makes this impossible, however, and a counselor's own cultural values often may not parallel that of the consumer. This should not prevent counselors from providing culturally competent service however.

VR counselors must be aware of the need to utilize interpreters and other minority professionals when appropriate. However, even when English is the native language of a consumer and his or her family, language difficulties can exist. This could be a literacy issue or may just reflect the unfortunate use of professional jargon that creeps into conversation as well as written materials. The VR counselor can help the consumer and their family understand their rights, responsibilities and options by carefully explaining and restating information when necessary, and by helping them to feel comfortable asking questions.

It is not possible for any counselor to have advance or in-depth knowledge of the cultural traditions of all the individuals they will encounter in their career. Cultural competence stems from a counselor's more basic appreciation of the fact that differences between the counselor's and the consumer's background may result in differing values that need to be explored and understood. Counselors should assure consumers and their families that their cultural values will be respected and convey that they are interested in learning more about them. If consumers or their families have negative perceptions of disability that are culturally based, VR counselors can sensitively offer alternative explanations.

Of course, assessments of family strengths must be individualized rather than categorized by ethnic group. Regardless of cultural heritage, each family will have developed its own way of interrelating. Moreover, a family's traditional values may not correspond with those of the individual with a disability. The consumer may have had a broader bicultural experience than other family members, including exposure to the disability community and disability culture, which may have expanded the range of options they are interested in exploring.

Counselors must be sensitive to how race and disability can limit the opportunities available to consumers and the resources of their families. Inadequate education, inaccessible health care, lack of employment opportunities and poverty are all factors contributing to an escalation of disability rates in minority populations (Asbury et al, 1991). Disabilities coupled with these harsh realities can impede an individual's progress towards their employment goals.

Racial discrimination is a fact of life for many Americans. It exists in the business community and among service providers and other agencies. Studies have documented the fact that the vocational rehabilitation system itself has not provided equal services to culturally diverse individuals. Minorities with disabilities are less likely to have been found eligible for vocational rehabilitation services, and if accepted, were less likely to be successfully rehabilitated (Wright & Leung, 1993). RSA spent less on services for individuals with disabilities from culturally diverse populations, provided them with fewer opportunities for academic training, and placed minorities in lower paying jobs (Wright & Leung, 1993; GAO, 1993; "Culturally Sensitive Rehabilitation," 1993). Counselors cognizant of these facts should be alert to identifying subversive cultural biases of their own that may lead to inequitable treatment.

Counselors will have to work hard to establish trust with consumers and families made wary from prior negative experiences with publicly funded social service programs. Counselors can try to counteract this skepticism on a broader scale by building relationships with organizations serving families in minority communities. Such efforts have the potential to identify eligible individuals who might otherwise be unaware of, or reluctant to apply for, VR services and to identify other natural supports within cultural communities.

Family Contributions

Disability clearly has an impact on the whole family. Yet, despite all the stresses related to a family member's disability, families are resilient. Love and caring can be the source of motivation, energy, action and commitment to the well being of their family member with a disability. The categories below reflect a range of roles families may assume that enhance their family member with a disability's ability to reach successful employment outcomes.

Families Provide Crucial Supports
  • Diminish stress for the consumer
  • Provide lifelong commitment and assistance
  • Provide emotional support for family members with disabilities throughout the VR process, during the inevitable rejections that follow job interviews and adjusting to the workplace.
  • Facilitate recreation and socialization
  • Cultivate relationships that lead to natural supports in the community
  • Assist with activities of daily living and personal cares
  • Provide financial support
  • Advocate for benefits and access to services
  • Act as guardian, conservator or power of attorney
Families Facilitate Rehabilitation Growth

Parents of youth with and without disabilities help prepare their sons and daughters for work from an early age by instilling values and work ethics, assuming future employability, building work and social skills, increasing independent thinking and action, cultivating personal responsibility, and enhancing self-image. However, family contributions to employability and the development of work skills can be life-long. The following examples are some of the ways family members support the rehabilitation of an individual with a disability whether they are a parent, sibling, child, or spouse. Families

  • Contribute crucial information to determination and vocational rehabilitation assessments
  • Help identify employment goals
  • Allow consumers to focus on rehabilitation goals by helping with
    1. legal issues
    2. insurance companies
    3. coordinating medical care
  • Access services systems that provide supports to their family member (e.g. transition, vocational rehabilitation services and medical care)
  • Advocate for benefits and access to services from other sources
  • Identify consumer needs and suggest ways to address them
  • Motivate family members with high expectations
  • Provide encouragement, coaching & feedback.
  • Help family members practice new skills
  • Promote self-determination by encouraging family members with disabilities to take responsibility for themselves, trusting in their ability to make good decisions - or to learn from their mistakes
  • Combat stereotyping based on gender or disability
  • Link consumer with local CILs and other disability organizations for peer support
  • Participate in Person-Centered Planning

Person Centered Planning is a process especially worth considering as a means to effectively involve families in vocational rehabilitation. Person Centered Planning focuses on an individual's strengths and empowers individuals with disabilities and their families. It provides a structure for the consumer, family members, the vocational rehabilitation counselor, others who are providing natural supports, and representatives of agencies providing formal supports to come together as a team. The person, who is the focus of planning, and those who love the person, and know him or her well, are the authorities. It can help VR counselors identify a range of natural supports available to families and clarify roles family members will play in the vocational rehabilitation process.

Meetings are held to 1) identify individual skills and interests that will lead to employment goals based on personal choice; 2) define work qualities that will enhance job successes and satisfaction; and 3) pool resources to assist in information gathering, the provision of support, and potential job leads. Concrete and comprehensive plans of action are developed and responsibilities spread out among individuals on the team. The process promotes collaboration and can result in more satisfying job placements as well as creative solutions to a variety of related issues and concerns (Massachusetts Rehabilitation Commission, 1999).

Family Contributions to Successful Employment Outcomes

Both research (Hill, Wehman, Hill & Goodall, 1985; Johnson & Thompson, 1989; Lakin & Bruininks, 1985; TATRA Project, 1996; Way & Rossmann, 1996) and anecdotal evidence (Schoeller, 1997: TATRA Project, 1999; Urbain, 1997; VCU & PEATC, no date) support the view that family involvement can increase the number and quality of job placements. Families help family members find employment and retain their jobs. Families can provide crucial supports that enhance job security long after a placement is deemed successful and VR counselors are no longer present.

Finding Employment:

  • Use personal networks of family including relatives, friends, neighbors, community businesses, and a family's religious community to identify job opportunities
  • Support an individual in their job search
  • Improve quality of placement and job satisfaction by advocating for employment options that reflect the interests and skills of their family member
  • Help family member prepare for job interviews Job Retention:
  • Help employee prepare for work in the morning
  • Act as a backup for personal assistance staff
  • Maintain assistive technology
  • Identify or provide transportation
  • Provide information to employer about accommodations that work
  • Cultivate external natural supports in the community
  • Provide a safe haven for family member with a disability to talk about their job and normal everyday job-related problems and frustrations
  • Problem solve with family member on how to deal with challenging workplace situations
  • Identify early warning signals for problems an individual is having with a job.

Although families make a number of significant contributions, counselors should not expect families to assume responsibility for all gaps or shortages in the service system. Staff need to both accept and respect a family's limitations, as well as strengths.

Impediments to Family Involvement

What is standing in the way of family involvement in the VR system? Both attitudinal and systemic barriers exist. Individual counselors may have to overcome past training based on assumptions that family involvement is irrelevant or antithetical to consumer choice. Former RSA Commissioner Fredric Schroeder has cautioned, "Beware of the rugged individualism stereotype. None of us really live independently, family interdependence is the norm."

Unfamiliarity with systems hinders family involvement. Families faced with a catastrophic event that results in disability must first summon the resources to deal with a crisis, and then face the complexities of understanding a new disability and their emotional response to it. They may have little energy left to devote to navigating service systems and can find them intimidating. Parents and families used to the special education system may have established ways of relying on the educational system, which do not carry over to adult support services. Many parents of young adults with disabilities are unprepared for the move from a single agency to multiple agencies, from mandated services to non-mandated services and from a system that assumes no rejection, a least restrictive environment, accountability and the importance of family involvement to one that does not.

Families may be reluctant to participate for other reasons. For example, families are exhausted from meeting the daily needs of their disabled family member; are tired of dealing with the system, or have had negative experiences and want to avoid further interactions. While professionals encourage maximizing adult independence, they may not understand the impact this will have on a family. Families may fear losing a check they depend upon, or the services of a family member currently providing needed childcare, or anticipate other costs in terms of time or energy. Families may approach the system with fears stemming from previous interactions with government agencies. Culturally diverse families may have been discriminated against or felt disrespected when they sought help from government programs in the past. Aging parents of older adults with disabilities may be equally skeptical of service systems because years ago professionals recommended institutionalization of their family member. Parents may also be influenced by mainstream cultural norms that emphasize less parental involvement in the daily life of their adult sons and daughters.

Families report feeling judged when they come into contact with professionals. When their expressed preferences are quickly dismissed as "unrealistic," families feel they are not being taken seriously. Professionals can unknowingly send a message to caregivers that they are either doing too little or too much. Families can feel they can't do anything right -

  • If we are concerned, we are overprotective; if we are unconcerned we are neglectful.
  • If we are involved, we are demanding; if we are not, we are detached.
  • If we have high expectations we are unrealistic; if we have simple aspirations we set our sights too low.
  • If we nurture generously, we are smothering;
  • if we nurture less we are withholding.
  • If we offer advice, we are controlling; if we refrain we are disinterested.
  • If we phone, write or visit often, we are pests;
  • if we don't we are uncaring.
  • If we help with tasks or give or loan money, we cultivate dependency;
  • if we don't, we are unsupportive.

Based on "Why Mothers Have a Tough Time" attributed to Jordan Miller, MD Center for the Study of Women's Psychology

Working with Families

How does a VR professional begin to engage families in the process? Alliance building requires engaging families by creating personal connections.

  • Make families feel welcome.
  • Be an active listener. Genuinely consider their ideas. Time spent listening is the cornerstone of a trusting relationship.
  • Involve families from the beginning in goal setting and developing plans for services.
  • Discuss new ideas and strategies before decision-making and implementation - with enough time to address a family's questions thoroughly.
  • Communicate regularly.
  • Build trust by following through on promises - particularly important when previous experiences with service providers have not been positive.

Becoming involved in the VR process requires families to commit time and energy. Families need both emotional and tangible supports to encourage and enable their participation. These may include

  • Moral support
  • Problem solving
  • Assisting consumers and their families to develop their own community supports - Both systems and natural and community supports should be developed to strengthen the family's ability to support a person in work.
Services and Supports for Families

The Rehabilitation Act provides several avenues of support for families. The Act authorizes the provision of services directly to family members when necessary to the vocational rehabilitation of an individual consumer (Section 103(a)(17)), and it also authorizes funding for special projects (Title III, Section 303).

Parent Information and Training projects have been funded by the RSA since 1993. These projects educate families about the vocational rehabilitation process, civil rights, independent living services and how to work with vocational rehabilitation professionals. The projects work closely with parent centers authorized by the Individuals with Disabilities Education Act (IDEA), Centers for Independent Living, and Client Assistance Projects. They particularly target the families of young adults with disabilities who are transitioning out of the special education service system.

Transition planning to prepare a student for post school activities, including vocational rehabilitation and employment, is mandated by IDEA and the Rehabilitation Act in Section 101(a)(11)(D). It is required for all students receiving special education services (Storms, O'Leary & Williams, 2000). Many of these young adults will need supports from the adult service system as they work towards achieving their postsecondary education, independent living, and employment goals. Vocational rehabilitation counselors can help facilitate a smooth transition for such students by participating in the transition planning process. Transition services for youth with disabilities that "facilitate the achievement of the employment outcome identified in an individualized plan for employment" are authorized vocational rehabilitation services (Rehabilitation Act Amendments in 1998, Sec. 103(a)(15). Both IDEA and the Rehabilitation Act require interagency agreements between education and vocational rehabilitation agencies, that facilitate the transition of students receiving special education services to vocational rehabilitation services.

The Rehabilitation Act requires state VR agencies to include an assurance in their State plan that applicants and eligible individuals, or their appropriate representatives (including families), will be provided information and support services to assist consumers in exercising informed choice (Rehabilitation Act Amendments of 1998, Sec. 101(a)(19)). As a limited number of projects are funded under RSA's Parent Information and Training Program, some State rehabilitation agencies are subcontracting directly with IDEA authorized parent centers funded by the OSEP in their States to provide information and training services to families. These centers operate in every State. (Visit www.taalliance.org for a list of parent centers.)

In addition to training grants, the Rehabilitation Act specifically authorizes funding for projects serving individuals with disabilities who are migrant and seasonal farm workers and their families (Rehabilitation Act Amendments of 1998, Section 304). The RSA offers additional avenues of potential support for projects promoting family involvement through its discretionary grants for model projects and inservice funding.

Finally, the Rehabilitation Act authorizes direct services to the family of an individual with a disability if "necessary to assist the individual to achieve an employment outcome" (Rehabilitation Act Amendments of 1998, Sec. 103(a)(17)). Ultimately counselors should approach providing services to families with the same individualized perspective that they apply to working with consumers with disabilities. There are a range of supports and services that must be matched to the individual needs of each consumer's family. The following are a few examples.

Services and Supports for Families
  • Meetings held at times convenient for family work schedules
  • Interpreters and translators to provide information in native language
  • Family support groups
  • Cultivating natural and community supports
  • Information about options, resources and rights
  • Contact with successful adults with disabilities
  • Counseling (Referrals to outside agencies for therapy beyond the scope of counseling services that can be provided by the VR counselor)
  • Day care services
  • Respite
  • Foster care
  • Financial management
  • Family planning
  • Marital counseling
  • Assistance locating housing
  • Education:
    • Information on newly acquired disabilities
    • Information on genetic research
    • Training on promoting the consumer's self determination & advocacy skills
    • Up-to-date information about disability services & systems
    • Understanding their family member's, and their own, rights and responsibilities
    • Skill development that enables family members to support consumers learning new methods of managing daily personal care and home maintenance
    • Training necessary to support a consumer's entrepreneurial enterprise to reduce overhead and provide for continuous operation of business

Joining the expertise and resources of families with the knowledge and resources of vocational rehabilitation professionals will create powerful new partnerships supporting individuals with disabilities as they work towards their employment and career goals. VR counselors who understand the family context of disability, who embrace the assumption that families can make positive contributions to an individual's vocational rehabilitation, and who provide opportunities for families to become active members of an individual's VR "team" are likely to engage consumers more effectively in the VR process, and ultimately, to foster more successful outcomes.

^ Back to Top ^

Chapter Three: The Role of the V.R. Counselor: Working with Families

"Since the origin in 1920 of the federal-state delivery system for vocational rehabilitation services, the VR consumer's family and the rehabilitation counselor have been infrequent partners." (Power, date?) This is unfortunate considering that literature in the field, based on practical experience, indicates family involvement is important in the rehabilitation process. When VR professionals develop a positive working relationship with the family, they increase the likelihood that people with disabilities will obtain employment. The family can also provide the consumer with supports that ensure far greater likelihood of success in maintaining that employment over time. It is to the credit of Vocational Rehabilitation today that not only has family been identified as a valuable resource, but VR professionals are seeking to identify and implement methods that will help them work with families. New and improved processes which access family support are needed to assist counselors as VR reaches out to serve more people with significant disabilities.

The importance of family in the vocational rehabilitation process has been heightened by IDEA and the subsequent focus on the successful transition of students from school to work. In fact, during the last decade the family has been identified as critical to the success of transitional students as they move from school to work. For students with disabilities, family involvement during transition is not only important, it is essential. Supportive families, actively involved in their young member's transition to the world of work, greatly increase the chances for successful transitions. However, young adults are not the only age group that benefit from the natural supports that families provide.

The family can provide critical supports for any member who is seeking employment or working to maintain employment. The family is a source of identity. It educates its members, provides encouragement, and assists its members in problem solving. As our population ages disability will become an even more natural part of the family experience. It is to our benefit to further acknowledge the importance of the family as a natural support within the broader context of rehabilitation.

Yet even when we understand the value of and need for family involvement, even when we are empowered to act, we remain hesitant. Perhaps our hesitancy arises, in part, from confusion over the role and function of the rehabilitation counselor. Our profession continues to struggle with the limitations of the medical model, which focuses on disease and deficits. When such pathology dominates our thinking we continue to look for evidence of disease, deficiency, or malfunctioning when assessing the family. Instead, we should shift our primary focus to family strengths. We should assess those strengths and work with the family rather than working around the family or standing in opposition to the family. As vocational rehabilitation enters the 21st century, our challenge must be to create a new model that creates a true partnership between people with disabilities, families and rehabilitation professionals.

Nevertheless, working with families currently represents a minimal part of the vocational rehabilitation counselor's daily work. Perhaps, because we pride ourselves on offering individualized services, we have forgotten how important the family is as a support group for all people. As a result we overlook a most important prognostic indicator and resource. Without losing focus on meeting the needs of the consumer, the rehabilitation process should be always viewed within the context of a larger social system involving family, friends, and community. Counselors, instructors and other VR professionals working directly with consumers should perceive the individual as a member of this larger interactive system rather than a solitary entity.

Many rehabilitation counselors believe they lack the proper training, time, and resources to work extensively with the family. However, as noted in the previous section, some of the most important things counselors can do to effectively engage families do not require extensive training or resources. Counselors can facilitate family involvement by simply making an effort to make families feel welcome, listening to what they have to say, following through on promises and generally building trust.

Furthermore, although counselors may doubt their ability to work with families they may, in fact, be more effective than many other community professionals such as social workers, psychologists, etc. (It should be noted that within the context of this manual, "working with families" refers to involving the families in the VR process, not to therapeutic clinical intervention, such as formal family therapy). One has only to consider the roles and responsibilities VR counselors have assumed since the profession's birth in 1920 to realize that the skills used when working with individual consumers could easily be applied to working with family members.

VR counselors have expertise in diagnostics and assessment, vocational counseling, individual and group counseling, case management and service coordination (including the development of support systems), and family and multicultural issues. Successful VR counselors have strong interpersonal skills and communication skills. They are creative and flexible. They are both challengers and advocates.

Rehabilitation counseling has been described as a process whereby the counselor works collaboratively with the consumer to understand existing problems, barriers, and potentials in order to facilitate the consumer's effective use of personal and environmental resources for career, personal, social, and community adjustment following disability (Jacques, 1970). The family can easily be viewed as a personal and/or environmental resource. In cases where families are the guardians of, and advocates for, individuals who cannot speak for themselves, they become the voice of the consumer and will play an even more significant role in the collaborative process.

Collaboration with Families

For the purposes of this manual a narrow definition of family (e.g., the nuclear, biological family) would be inadequate. Many people with disabilities do not have, or may not wish to have, access to their families of origin. Moreover, given that the purpose of this document is to assist rehabilitation professionals in finding ways to form problem solving partnerships with families, a broader definition of family that allows for a wider array of resources is preferable. It is more helpful to adopt a definition where family is thought of as a small human society with structure, patterns, and properties that organize stability and change. The family's members tend to maintain contact, have emotional ties, and a shared history (Minuchin, 1998).

For our purposes a workable definition of collaboration is a process of joint decision-making among stakeholders who act in coordination to further their shared interests. Stakeholders can be both individuals and organizations. Actors retain their independent decision-making powers; relationships are characterized by mutual respect, trust, and tolerance; there is a change-oriented nature to the relationship; and each actor acknowledges multiple perspectives, shared responsibility, and accountability for decision making.

The Prime Study group believes that the following basic principles are key to successful collaborations with families:

  • The rehabilitation process goes beyond the individual to include both the individual's support system and the context in which this system is embedded
  • All stakeholders in a collaborative process deserve to be heard and respected, although not necessarily in agreement
  • The rehabilitation professional plays the role of collaborator, colleague, and team member
The VR Counselor as a Systems Consultant

Human service workers help individuals and families deal with challenging forces in their lives. These forces can include poverty, various forms of violence, and the disruptions in life patterns brought about by disability. Vocational rehabilitation professionals operate at the center of these intertwining forces. The breadth and depth of their mandate, to work with the complete range of employment and independent living issues brought about by disabling conditions, require them to excel at assessing, networking, and synthesizing at multiple human systems levels.

The increasingly complex problems people with disabilities face today have created a need for a shared vision across human service agencies (Wylie,1992 ). It is not uncommon in urban areas, for example, to find individuals who have a mental illness, plus an HIV infection, plus a history of substance abuse, plus a multi-generational history of poverty. The role of a systems consultant, a professional conversant with, and capable of acting as a change agent in the full array of human systems, has been proposed as a way of creating this shared vision (Wynne, 1987). It is one of the main arguments of this chapter that the VR counselor is already well suited to fill this role.

By their nature, the goals of assisting people with disabilities to work and to live independently require collaboration with a diverse array of organizations and professions. To the standard repertoire of evaluation, physical therapy, occupational therapy, rehabilitation nursing, speech-language-hearing therapy, psychological counseling, vocational assessment, training and placement, and training with prosthetics and orthotics are added the more recent services of recreational therapy, drivers training, marital and family therapy, sex counseling, pain control, dental care, transportation, remodeling of home and workplace, visiting home nurses, meals on wheels, community support groups, and Centers for Independent Living (Albrecht, 1992)

To serve each VR consumer, the rehabilitation team, and in particular the VR counselor, must advise and advocate for that VR consumer within the familiar service network, or use their expertise to go beyond that network to create new partnerships and new services.

One level of human systems frequently overlooked by the rehabilitation system is the family. A number of authors have described the limitations inherent in the VR program's traditional focus on the individual to the exclusion of the family (Cottone, 1989; Cottone &. Emener, 1990 ). In fact most VR counselors are not trained to work with families in the employment process, and frequently view them as irrelevant or as a barrier to achieving rehabilitation goals (Oulvey, 1999).

The Prime Study Group believes that the family, the primary emotional support system for most people in human society, is a largely untapped resource in the practices of the rehabilitation system. We further believe that the concepts and skills necessary to work effectively with families are the same skills needed to realize the full potential of the systems consultant role.

The primary skills needed to work with families are those necessary to build collaborative relationships to solve problems. These skills are applicable in a variety of VR related contexts, including developing partnerships with sister human service agencies; analyzing the needs of, and making connections with employers; working effectively with complex programs such as the Social Security Administration, and with emerging programs at the State level, such as those engendered by the Workforce Investment Act legislation; and adapting new technologies, such as the Internet, to the use of people with disabilities.

From this perspective, working with families naturally enhances the ability of VR counselors and other VR staff to produce successful outcomes. A counselor's collaborative and problem-solving skills become even more crucial as recent changes in Social Security legislation, freeing many people with disabilities to seek work without fear of the loss of health care benefits, coupled with an unprecedented strong economy should focus the rehabilitation system to an even greater extent on those people with disabilities.

Levels of Involvement

Each consumer's situation, and the relationships, resources and experiences of each family, will determine the counselor's level of collaboration and involvement with families. At times this might include discussing family expectations for the consumer, their family and the world of work. At other times it might mean enlisting the family's assistance and strength to ensure better prognosis for their family member. The following chart provides a way of characterizing the range and differing levels of counselor interactions with families. VR counselors making a proactive effort to involve families in the VR process will likely operate in the range of Levels 2 to 4. Level 1 does not reflect the active involvement of families. However, it may still be appropriate in specific situations, for example, when the consumer does not want to involve their family. Level 5 needs demand more involvement than most VR counselors can provide and would likely require referrals to outside providers of intensive family therapy.

Adapted from Baird & Doherty, 1986)

Counselor/Family Involvement Levels

Individual and Family Therapy - Level 5

  • Understand system dynamics and intervention strategies for multi-problem families.
  • Skills include the ability of the therapist to:
    • Maintain self-leadership in intensely emotional and adversarial situations
    • Apply complex treatment approaches
    • Intervene decisively in crisis situations
    • Diagnose and prescribe interventions for major illnesses

Systematic Assessment and Planning - Level 4

  • Understand multiple perspectives and levels in human systems.
  • Understand the VR Counselor's own relationship to multiple systems, including the consumer's system, the family systems, the institutional system, the community system, and their own internal system.
  • Skills include the ability to:
    • Assess consumer issues on many levels engage consumers and their families in planning (including families reluctant to participate or who have difficulty communicating their ideas and perceptions)
    • Redefine problems in ways that suggest solutions
    • Identify and understand those aspects of the consumer's and family member's personalities that may impede the setting and attaining of goals
    • Promote the consumer's self-determination skills and the potential for growth of all participants through the negotiation of roles and responsibilities in the problem-solving process
    • Educate and lead members of the interdisciplinary team towards an effective collaboration supporting the goals of the consumer

Support and Encouragement - Level 3

  • Knowledge of individual and family development stages and the impact of disability on the developmental tasks at each stage.
  • Awareness of the VR counselor's own feelings in the counseling relationship.
  • Skills include:
    • Empathic listening
    • Encouraging efforts at coping
    • Giving advice that meets the unique needs of consumers
    • Making referrals that reflect an understanding of the unique consumer and family circumstance

Information - Level 2

  • Some knowledge of relationship systems.
  • Willingness to work with consumers and their families collaboratively.
  • Skills include the ability to:
    • Communicate clearly
    • Accurately convey information about consumer options (providing the basis for informed choice)
    • Select key family members to relay information
    • Identify problems and make referrals

Minimal Contact - Level 1

  • Deal with the family only when necessary or required by law.
  • The family is viewed as superfluous or as a hindrance to the rehabilitation process. (Unfortunately, this may characterize the current attitude of many rehabilitation programs.)
Engaging the Family

It is ultimately the consumer's choice as to who is invited to the meeting, just as it is up to the consumer to decide who is or is not part of their family. If the consumer is reluctant to invite the family, the counselor might give them the option of inviting one or two members. In the definition of family used for this document, the invitees chosen by the consumer might be a caseworker or a friend.

After obtaining the consumer's permission to speak with family members, the counselor can contact the family to arrange a meeting. Engaging some families might prove challenging. If family members are reluctant to join the consumer's vocational rehabilitation team, it is helpful to remember that there could be numerous reasons for doing so. Some families see intervention by medical and vocational professionals as intrusive. Because medical and psychological interventions are usually focused on the individual, this may be a new experience for some families. Some families may have developed a basic distrust of professionals. Verbal reinforcements may be helpful in encouraging and supporting these families during what might be uncomfortable dialogue for them. The counselor could then suggest how the family could be important to the process, and how it could assist its member to be successful in job acquisition and maintenance.

Once the family is engaged, the counselor can obtain information critical to the rehabilitation process, particularly specifics regarding both potential barriers and supports. Contact should be brief and might only consist of one to three visits. Counselors might find it beneficial to include all family members in at least one meeting in order that each member could become aware of issues and concerns of the other members.

The first meeting with the consumer and their family is the initial opportunity to begin the partnership. It can have a major impact upon the success or lack of success of the rehabilitation process. There are four critical goals at this stage. The first is to establish a connection with the consumer. Second, enlist the participation and support of the family. Third, provide information the VR consumer and family will need. Fourth, come to a mutual understanding of the family's strengths and constraints.

After acknowledging confidentiality, the counselor must strive to put aside his/her perceptions and judgments. At first it is most important to listen and to be sensitive. The counselor should pay careful attention to his/her own communication style and body language. Although family needs may not be identical to professional needs, families want professionals to respect them and work with them.

Even if counselors do not share the culture or language of a consumer's family, they can demonstrate positive regard and empathy. Vocational rehabilitation counselors working with families cannot be expected to be experts on all cultures. However, certain cultural patterns have been identified which differentiate the family experience of different cultural groups. During the assessment stage, counselors must demonstrate respect and appreciation of diversity of culture, ethnicity, race, gender, economic level, and religion. Counselors should determine who is part of the family; how the disability is perceived by the family; how the family makes decisions; what members expect of each other; what level of support is received from friends and community; whether, and how closely, the family adheres to traditional values; and, how willing the family is to accept help (McCallion, 1997).

The counselor should also create an open dialogue regarding the appropriateness of family involvement in the rehabilitation process and the importance of having the consumer's needs and wishes drive the process. During assessment key issues and players must be identified.

If we choose to view the family as a resource, it is critical that the rehabilitation professional have a sense of how extensive a resource the consumer's family could be. One approach counselors might consider is to ask the consumer and their family members to draw a map of who is in the family.

The counselor could ask the consumer and the family members to show "who is in your family or who do you know that you can count on for support?" While there are elaborate methodologies for constructing family trees or genograms, the VR counselor can simplify the process. Family members can be instructed to use squares for females and circles for males and to write names in the circles and squares. The professional might encourage the family to think beyond immediate members by asking questions such as, "Who else is concerned that Samantha doesn't have a job? Who might be pleased if she gets and keeps employment? Who might help in the process? Who might interfere with the process?"

Identifying and Cultivating Family Strengths

The counselor should assess strengths the family brings to the rehabilitation process as well as identify any constraints that exist. If these strengths are unidentified, the counselor is left without valuable resources that could positively impact vocational prognosis. Questions counselors should explore include:

  • What is the composition of the family? What are family strengths? Are there strengths in communication, problem solving, planning, etc.?
  • What are family communication patterns?
  • How has the family influenced the development of their member's work personality?
  • What is the family's perception of the disability?
  • What is the family's perception of their member's potential for increased independence in the community and at work?
  • How have family members responded thus far, both emotionally and behaviorally?
  • Are coping mechanisms in place, and if so, what kind? (Many families cope effectively and have, in fact, been strengthened by presence of disability.)
  • What kind of supports does the family currently provide to the consumer?
  • What is the knowledge level of the family regarding the disability, employment opportunities, and community resources?
  • How effectively does the family utilize community resources - or have they chosen not to seek help?
  • If they have chosen not to seek help, is it due to previous negative experiences or to cultural differences and expectations?
  • What does the family need?
  • What does the family most want?
  • Is there a correlation between the consumer and the family objectives?
  • Are there family issues (e.g. estranged relationships, differing goals, limited resources, work disincentives) that might negatively affect the vocation process?
  • Openly discuss disincentives. In particular, families often have concerns about loss of entitlements to Social Security and Medicaid.
  • Would the families prefer to not jeopardize their member's benefits and entitlements? If so, why?
  • Have they been made aware of alternatives to loss of benefits?
  • How will the loss of entitlements affect the family, as well as the specific family member?
  • Are their concerns realistic, or are they based on a lack of knowledge or a reflection of other issues?
When Families Need Help

Following the assessment process, the counselor can begin to help families address any issues that have been identified. The family's mental health, as well as the consumer's, is important in the rehabilitation process. Anxiety might be reduced by increasing family knowledge of the vocational rehabilitation process, relevant services and programs. Such terms as "vocational assessment" and "job coaching," while common to Vocational Rehabilitation professionals, may be foreign to family members. If there is a need, the counselor can help the family understand and accept their family member's disability as well as their feelings about the process. Services to families may include education about the specific disability and the availability of community resources and alternate support systems. Some families have lived with disability for many years and have well established coping mechanisms. Sometimes this includes a fierce independence and reluctance to trust community options. These families can be assisted to reach out for additional support.

In addition to these concerns, counseling could focus on developing problem solving skills needed for family support in achieving vocational goals. Some families demonstrate behaviors that are an impediment to the vocational process and may benefit from a referral for appropriate clinical therapy. The VR professional can teach such families about the benefits of obtaining new skills. Even when all efforts for support have been exhausted, some family members may be a liability rather than an asset to the vocational rehabilitation consumer.

Some level of conflict is normal in human relationships and a skillful counselor can channel such tension toward productive outcomes. Sometimes a VR counselor has to "know when to hold 'em, know when to fold 'em" and know when to walk away. These situations require a great deal of finesse and skill in conflict resolution. When families need help, the Vocational Rehabilitation counselor can be a catalyst for positive change.

Reframing: A Helpful Skill

Individuals and families define their options by the assumptions they have about themselves. Listen closely to the "stories" told by the consumer and their family for evidence of family strengths. The stories they tell reveal their perceptions of their capabilities. These perceptions can expand or constrain choices by recognizing or denying strengths. Even when consumer and family stories are overwhelmingly self-negating, counselors can use the technique of reframing to highlight strengths. Reframing can help the VR consumer find the positive spin in their descriptions of their ability to solve problems and to express their competency.

Reframing provides a means for the rehabilitation professional to:

  • Challenge negative explanations in a nonaggressive way ("Maybe it wasn't a failure to quit that job. Maybe you had learned enough about your interests to realize that it was not for you.")
  • Remind consumers and family members when they unintentionally describe strengths ("Are you saying you were able to help Samantha get to work on time for a month last year?")
  • Recognize signs of connections between members of the family ("You know when you come down so hard on John, it sounds like you are really wanting him to succeed.")
  • Suggest alternative explanations for actions that are as true as the one preferred by the family ("I'm not disputing your opinion that Mike is lazy. Perhaps just another way to say that is that the illness drains him of the ability to motivate himself.")
  • Underline adaptive abilities ("You know, with everything you've been through as a family, it is amazing that you are doing as well as you are. How do you find the strength to get through these things?")

Common rehabilitation techniques, such as On-the-Job-Training experiences, provide excellent venues for recognizing and exploring alternative explanations and behaviors. Development and Life Stage Research on family development has lead to the general conclusion that families tend to go through predictable stages. Looking at the stage of life cycle the family was in at the time of the emergence of the disability; and the life cycle tasks the family would usually be experiencing at the time rehabilitation issues are considered can provide insight into the impact of disability on a family (Rolland, 1987).

Traditional Stages of the US Family Life Cycle (late 20th Century) Adapted from McGoldrick, M., a