J. Dale Munro, MSW, RSW, FAAIDD,Regional Support Associates
Clinicians, front-line professionals, and agency managers (hereafter referred to as "professionals") usually come into contact with families of people with disabilities on a regular basis. Yet, effective family-work methods may be the most neglected area of training for most professionals in our field! Assisting professionals to successfully develop the skills to work well with families can make the difference between tremendous progress, or failure in properly supporting a person with a developmental disability. In fact, even well-developed individual treatment programs can be rendered useless if the family stands in the way.
As much as we might hate to admit it, some of the most challenging behavior professionals ever face may not be from people with developmental disabilities - but from their families! (Munro, 2007) A question professionals must ask themselves is: "When a family is really struggling, or upset with you or your agency, what tools do you have in your tool-kit?" Training professionals and organizations to work more effectively with families can ultimately improve the quality of life and treatment potential of people with developmental disabilities; and can contribute, in an general sense, to strengthened agency and social support networks.
Obviously, most community professionals cannot be expected to be sophisticated family therapists. In our field, social workers tend to be the only designated profession systematically trained in family counseling and support methods. This paper focuses on the efforts of one clinical team - Regional Support Associates -- to increase the family-work skills of community professionals in its large service area. This project concentrated on teaching essential family-work skills to professionals with the objective of improving agency-family relations -- especially important when dealing with individuals with complex needs. Learning these skills was found to greatly improve family-system cooperation, collaboration, and stress levels for everyone involved.
Key Insights Concerning Family-Work
After working 38 years in the field, the author has arrived at some basic beliefs about working with families that he emphasizes in his presentations. To successfully work with families, it is crucial that professionals adhere to the following beliefs:
·It is not easy (for any of us) to be a parent! If you happen to have a (younger or adult) child with a disability, the task is much more challenging.
·Every family (even in extreme cases where sexual abuse has occurred) has some strengths, gifts and talents - and it is the art of the professional to bring out these qualities using a "strength-based social work" and "positive psychology" perspective (Early & GlenMaye, 2000; Harris, Thoresen & Lopez, 2007; Russo, 1999; Saleebey, 1996).
·Conflict between professionals and families is not necessarily a bad thing. This can be a positive sign that people really care. Disagreements, or the presence of an ongoing creative tension, can be the impetus for real social change, emotional growth and authenticity in family-system relationships. In fact, interpersonal disputes between families and professionals are an inevitable fact of life - and usually can be successfully resolved, if professionals respond appropriately.
·In the long run, families seem to hold a special respect and never forget those professionals who have "hung in" with them faithfully, when the family was really struggling or particularly disagreeable. In the same vein, professionals who stick with families through trying times often eventually find their work with families to be one of the most rewarding aspects of their professional lives.
·There is an esoteric type of pain, grief, and trauma found in and experienced by families of people with disabilities. Professionals working from a traditional biopsychosocial model may miss the fact that many families have "broken spirits" and effective intervention must also focus on spiritual healing. Spiritual (not necessarily religious) approaches include showing compassion and kindness, helping families discover meaning in their suffering, offering hope and developing faith that current painful circumstances can improve; and striving to find some degree of peace, joy, harmony and fellowship, even amongst seemingly hopeless situations.
·Having a child with a developmental disability, despite an urban legend to the contrary, does not necessarily destroy a marriage and a family. This might occur, if there are serious pre-existing couple problems. Yet, recent literature reviews and research suggests that facing adversity in raising and supporting a child with a developmental disability sometimes actually "transforms" a family to become more cohesive and psychologically stronger (Kausar, Jevne & Sobsey, 2003; Scorgie, Wilgosh, Sobsey & McDonald, 2001; Stainton & Besser, 1998; Taunt & Hastings, 2002; Weiss, 2008).
Teaching Essential Family-Work Skills
Community professionals often find themselves in situations where they are confronted by frustrated, angry, and "challenging" families (Munro, 2007). One agency manager commented that her staff sometimes become so "rattled" by the behavior of some families, that their job performance is affected ["Staff (or managers) operating out of fear make mistakes!"]. Based on concerns raised by local agencies and professionals, Regional Support Associates, a multidisciplinary clinical team responsible to a large geographic area, began several years ago to set up regular two-day training sessions for professionals on the topic of "Understanding, Helping and Coping With Families Who Challenge Us!"
More recently, Regional Support Associates , in collaboration with our community partners, developed comprehensive clinical training sessions for professions who work with people exhibiting extreme emotional and behavioral disturbance. The objective, along with some alternative residential initiatives, was to improve the community's capacity to provide "Enhanced Specialized Services" that minimize individuals being admitted to psychiatric facilities. Psychologists, social workers, behavior therapists, and managers insisted on including training in effective family-work skills, a key module of the comprehensive "Advanced Behavioral Training" package. This decision was pragmatic and forward thinking. In comparison to other jurisdictions, it is highly unusual for professionals being taught sophisticated behavioral methods to also be required to cover effective family-work skills as an essential component of their training.
Clinical experience, and lively discussion during family-work training workshops, has helped to identify core family-work skills that we believe all professionals should know. Skills numbered 1, 2, 5, 6, 7, and 9 can be considered primarily cognitive in nature; and skills 3, 4, 8, 10, 11 and 12 can be viewed as primarily interpersonal. The 12 essential family-work skills follow:
1. Understanding History: As a starting point, it is vitally important to help professionals, who themselves may be overly-critical of families, to gain some level of historical perspective. They need to be informed that almost every significant service advance for people with developmental disabilities has come about because of hard-fought advocacy by dedicated family members. It is also worth noting that there have been tragic times in human service history when professionals recklessly blamed parents for their children's disabilities - e.g., the outrageous belief 'refrigerator mothers' caused autism (Bettelheim, 1967). We, as professionals, must never allow ourselves to return to this sad historical tendency to blame parents; and we must vigorously guard against viewing families as "the enemy."
2. Recognizing "Healthy" Families: Professionals are often too quick to criticize the relatives of people with disabilities and may tend to "pathologize" family behavior that is essentially normal (e.g., appropriate assertive expression of concerns). Professionals must recognize that even healthy families can become negative at times if they are exhausted or not comfortable with how services are provided. They can have a "rough day" or can be argumentative on occasion, if frustrated. As well, professionals can be taught that healthy behavior is manifested by those families who project a sense of pride, safety, mutual support, affection, and fun; who are protective of each other; and who regularly involve the person with a disability in family and community activities.
3. Building Positive Relationships: Professionals sometimes need to be reminded that collaborative relationships with families frequently begin in the simplest of ways, by initially engaging in casual small talk, practicing empathic listening, and sharing a coffee. Rapport with families can be enhanced by professionals who focus on "here and now" issues; avoid jargon; celebrate (even small) successes with the family; suggest inspirational or helpful reading about self-care [e.g., Baskin & Fawcett 2006's book More Than a Mom]; and strategically use well-timed (appropriate) humor, frankness, cheerleading, and brief inspirational and motivational speeches. When dealing with particularly disturbed people with disabilities, families often are desperate for, and appreciate staff suggestions about, calming activities that allow visits with the individual to go better (e.g., going for walks in nearby parks, car rides, trips to the beach, or preparing a favorite foods together). This advice can contribute to a growing sense of family-agency teamwork and cooperation. As well, family-professional relationships can improve through the use of regular planning or support circle meetings that may include the individual, family members, friends, volunteers, and key professionals. These meetings help to reduce family isolation, improve planning, and create strong family-system networks.
4. Listening that Promotes Assertiveness: Most professionals know that "active" or "empathic listening" involves putting oneself in the other person's shoes, paraphrasing briefly the other person's words and message, and acknowledging how she/he is feeling. However, many do not realize that "negative inquiry" (Smith, 1975) is a powerful strategy that can be used in conjunction with active listening. Negative inquiry involves calmly and rather paradoxically prompting families to criticize existing services even more than they want to [e.g., "Are there any other concerns that you have? Are you sure there isn't anything else?"]. This brings to light previously hidden information that might be helpful, or exhausts criticism if it is detrimental or manipulative. This approach usually guides family members and professionals to become more assertive and less critical and to feel really understood. This process works even better if the professional takes written notes and carefully records family concerns, with the understanding that each concern will be taken seriously and addressed in turn. Sometimes, the professional may need to "buy some time," and this can be done by making a commitment to get back to the family at a pre-determined date and time, in order to ensure a more informed response regarding the issues raised.
5. Learning "The Basics" of Family-Work Theory: Community professionals need to know something about formal family-work theory. For instance, Systems Theory can help them better comprehend family resistance to change and methods for seeing problems from the perspective of the big picture (Satir 1967, Von Bertalanffy, 1968). Crisis Intervention Theory can help professionals realize the opportunities to affect positive change, growth, and renewal, as well as recognize the pain, inherent in family crises (Rapoport, 1965). Chaos-Complexity Theory can explain how agency-family relationships can unravel so quickly, how simple strategies can sometimes be a tipping point for significant family change, and how some order is always present in apparent chaos (Warren, Franklin & Streeter, 1998). Finally, familiarity with Strength-based Theory and Positive Psychology can teach professionals how to bring out the best (most positive features) of even the most challenging relatives by focusing on what's right rather than wrong with the family (Saleebey, 1996; Russo, 1999; Early & GlenMaye, 2000; Harris, Thoresen & Lopez 2007).
6. Really Understanding Why Families Challenge Us: Many professionals need to be better educated as to why families sometimes give us such a rough time. They need to become more insightful about how unresolved grief can affect family behavior and emotions (e.g., following the diagnosis of a disability, when there is a death in the family); how intellectual and communication deficits, language and cultural differences, powerful personality dynamics, caregiver exhaustion, and hidden mental health problems can contribute to disturbed family behavior; or how relatively healthy families can be labeled difficult, when the real problem may rest with exhausted professionals or impersonal, unresponsive, or nonexistent human services.
7. Managing Expectations and "the Unconscious:" Families showing self-destructive or intimidating behavior, or extreme resistance, can elicit strong, sometimes unconscious, emotional reactions in professionals. Professionals must abandon perfectionism and unrealistic rescue fantasies when dealing with highly complex people and emotionally-charged situations. It is often helpful to assert that "this is a very complex situation" and explain that slow and careful changes, rather than quick fixes, usually offer the most promise ["This is a Marathon, not a sprint!"]. Professionals also need to understand how "countertransference" (i.e., issues from a professional's own psychodynamic past) can negatively contribute to unrealistically high expectations of themselves; to overidentifying with certain family members; to projecting unrealistic blame or expectations onto certain relatives; or to distorting their emotional response to certain people (e.g., anger, repulsion, or severe anxiety). Clinical supervision, regular staff meetings, and, if necessary, professionals themselves going for counseling can help to minimize these concerns.
8. Becoming Aware of Unspoken Family Questions: To ensure family-system cooperation, agency representatives need to become more skilled at reassuring families. This reassurance (requiring examples from the individual's typical week) must address questions that are seldom stated openly. Family members often continuously "test" professionals and organizations to reassuringly answer four unspoken (but vitally important) questions: Do you really care [about my relative/me]?; Is my child/relative really safe?; Is my child/relative happy?; and, Am I a good parent/sibling/grandparent?
9. Learning "the Name of the Game is Reframe:" In the author's clinical experience (and from conducting presentations with a large variety of professional audiences), it is not unusual for some professionals to talk about families in an extremely pejorative manner when speaking privately. Reframing is an extremely positive and powerful strategy to help professionals counteract this tendency. Reframing involves teaching professionals to re-think, in a more constructive, less emotional, and more rational manner, their negative descriptions or thoughts about a family member or situation. To be effective, professionals must learn to purge negative and degrading words not only from their everyday speech, but also from their beliefs and thoughts! For example, a professional's angry statement ("That mother is a control freak, a manipulator and a real ****!") might be much more accurately and sensitively reframed as ("She is a concerned, courageous, and passionate advocate!"). When professionals begin to utilize reframing in their thoughts and verbal interactions, their relationships with families tend to immediately improve. When professionals teach family members to reframe their perceptions of professionals, agencies, and events around them, families ultimately become healthier, cope better, and become more cooperative (Lustig, 2002; Minnes & Woodford, 2005).
10. Clarifying Roles: One of the greatest sources of acrimony and confusion between service providers and families results from unclear roles and expectations. Families and professionals can improve their relationships and reduce distress by deciding who does what, how, and when. To illustrate, in particularly complicated situations, a written service agreement is often useful in outlining the responsibilities of agencies, professionals, families, and the individual, to enhance the possibility of treatment success. As well, it is often wise to designate only one contact person (usually a supervisor or middle manager) through whom families can raise serious concerns with an agency. Some families prefer to approach many different (often part-time or weekend) staff with complaints or deep concerns, but this usually results in miscommunication and emotional upset. One contact person should be identified, and a brief written script can be created and rehearsed by staff to be used if family members approach them with complaints ["I know you're concerned, and I will ask Joe (the contact person) to get back to you about it!"]. Likewise, staff should feel empowered to suggest positive ideas or raise concerns about the family's behavior with the designated contact person. Staff ideas or concerns can then be addressed with the family at regularly-scheduled planning or support circle meetings. Please note that constructive complaining should always be a two-way street.
11. Learning to Cope with Difficult People: Strategies have been developed that can help professionals maintain confidence, assertiveness, and balance power when facing families who seem intimidating, explosive, or manipulative. These coping techniques often utilize role-play and focus on maintaining politeness and finding one's center of calm. These approaches emphasize the need to "stand up without fighting," since some families will never respect people whom they feel they can push around (Bramson, 1981). As well, staff can be taught to respond effectively with angry or anxious family members by calmly speaking more quietly, firmly, slowly, succinctly, and gently maintaining eye contact.
12. Setting Proper Boundaries: Boundaries are the physical, psychological, and spiritual space professionals create around themselves that define how they will relate to individuals and their families and how they are willing to let others treat them (Black & Enns, 1997). Professionals who learn to set appropriate work-related boundaries (e.g., reducing excessive overtime, politely ending acrimonious meetings, demonstrating team solidarity in not disclosing certain personal information with families, showing caution about receiving gifts or giving hugs, and not giving out home phone numbers) tend to manage stress better - and families inadvertently benefit from dealing with healthier, more confident professionals.
Most professionals involved in the developmental disability field receive little or no training in effective family-work methods, yet often interact with families on a regular basis. With this in mind, it is important that professionals develop specific skills for improving communication, "mending broken spirits," and ensuring a strong foundation of professional-family cooperation. This paper has highlighted the work of one clinical team to attempt to remedy this situation through the use of regularly scheduled professional training which focuses on learning essential family-work skills. Twelve cognitive and interpersonal skills for professionals are emphasized that can help to improve family-system collaboration and teamwork, reduce distress, and improve behavioral and psychiatric treatment for people with developmental disabilities. The author believes that teaching these family-work skills should be an essential part of any comprehensive treatment program that hopes to support people presenting complex needs.
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For further information, please contact Dale Munro at firstname.lastname@example.org.