Tag Archives: Rehabilitation & Disability

Rehabilitation & Disability

Understanding and working with service dog handlers

By K. Lynn Pierce October 8, 2018

It happens almost as soon as Emily steps through the door of the grocery store. “What do you think you’re doing in here with that?” an employee demands loudly while moving to block her path. He’s pointing in anger at the black Labrador retriever beside her. As Emily comes to a halt, her service dog, Todd, automatically sits. He’s braced slightly against her leg to help her balance.

“We don’t allow dogs,” the employee states emphatically. “It’s a health code violation.”

“This is a service animal. He provides medical alert to assist me with my disability and is permitted to accompany me by the Americans with Disabilities Act [ADA].” The well-rehearsed line flows from Emily’s mouth even as she feels herself flushing, aware that people are staring as they pass. She wants desperately to move farther into the store, out of the way.

“Well, what about your papers or ID? I need to see some proof,” the employee insists, crossing his arms and looking at Emily in clear disbelief.

Emily replies, trying to stay calm. “The ADA doesn’t permit businesses to ask for proof of disability, and there are no registries or certifications for service animals.”

As the employee blusters and scoffs, Emily signals to Todd, who stands and walks with her around the employee. Thankfully, he does not follow them, but Emily still pushes down a wave of panic that he might call the police or that someone else might try to make her leave the store before she can get what she needs.

It’s the end of a long day, but partway to the checkout counter, Emily realizes that she forgot to grab bread to go with tonight’s dinner, so she and Todd head down the front aisle to the bakery. Along the way, Emily does her best to block out the delighted cries, sounds of surprise and conversations that break out as she and Todd pass. Emily hears one couple wondering whether she is a dog trainer because she doesn’t look like she’s blind. What could be wrong with her?

While looking at the choices of dinner rolls on display, Emily is startled by a shrill voice behind her. “Oh, what an adorable puppy! Can I pet him?”

Emily turns to see a woman already reaching toward Todd, who, on cue, backs partially behind Emily as she steps forward in front of him. “No, ma’am, please don’t distract him. He’s working.”

“Oh, it’s all right. I love dogs,” says the woman, now trying to reach around Emily’s leg to get to Todd.

“He is working,” says Emily firmly. “Please leave us alone.”

“Well, there’s no need to be so rude about it. Why would you bring a dog if you didn’t want people to pay attention to it?” exclaims the woman, glaring at Emily as she walks off in a huff.

Emily goes directly to a self-checkout to avoid more interactions with employees. By the time she reaches the car, Todd is alerting her that her heart rate is elevated. Emily sits in the car for a few minutes, shaking and breathing heavily before she feels safe to head home.

This is a common experience for people with disabilities who require service animals. For these individuals, their service animals are their lifeline, but all too often, they experience disproportionate discrimination, invasive questioning and other unwanted attention. Service dogs are becoming more common, particularly for people who have invisible disabilities. Consequently, it is more important than ever that counselors become comfortable working with service dog teams and know how to respond when clients ask whether a service dog would be helpful for them.

Defining a service animal

It is helpful to first understand what a service animal is not. Service animals are frequently confused with emotional support animals and with therapy animals.

Emotional support animals are pets that are permitted to live with or travel with someone who has a disability. They are not required to be trained in any specific way, and animals other than dogs can be designated as emotional support animals.

Many counselors are already familiar with therapy animals because they are often used in animal-assisted therapy. Therapy animals are simply animals that are used by their handlers to assist others, frequently in mental health or medical settings, but also in courtrooms and during crisis or disaster response scenarios. Often, the facility in which the handler works will impose general training or temperament requirements for therapy animals, but these animals are not expected to do specific tasks.

When it comes to service animals, there are a number of misconceptions. One of the most common myths is that service animals require a special certification or license or official documentation. In reality, there is no registry or certification for service animals that has any legal meaning. Another myth is that service dogs must be a certain breed or size, but there are actually no restrictions. In fact, many small breeds make excellent medical alert dogs and don’t require the space considerations that larger breeds do.

So, what is the definition of a service animal? According to the ADA, a service animal is a dog that has been individually trained to work or perform tasks for a person with a disability. A disability as defined by the ADA is a legal term, not a medical one. Under the ADA, a person with a disability is someone who has a physical or mental impairment that substantially limits one or more major life activities.

Service animals are not pets; under the law, they are considered to be necessary medical equipment. They can be in public with their handler because their handler has a right to equal public access under the law, and the service animal performs tasks required by the handler to achieve that access. This means that outside of a few specific limitations, service animals are allowed to go anywhere that a wheelchair, walker or other assistive device can go. Just as wheelchairs are custom fit for their users, service animals are specifically trained for an individual’s needs through a set of trained tasks.

Trained tasks are not actually defined by the ADA. The only thing the ADA clearly states is that comfort is not a task. This is very important, so let me elaborate. Counselors may have cause to think about and discuss with a client whether a service dog would be helpful for that client. However, if after researching categories of tasks, the answer to the question of “What would a service dog do for my client?” is anything like, “It would make them feel better when they experience anxiety,” then the client cannot utilize a service animal.

Because the ADA defines only what a trained task is not, organizations such as the International Association of Assistance Dog Partners provide lists of common tasks. Generally, these tasks are broken down into categories on the basis of what the tasks accomplish (hearing, mobility, guide, medical alert, psychiatric assistance, etc.) or what “kind” of service animal might perform them. Because counselors are not typically experienced in training dogs, it is easier to start with determining broad categories of tasks that counselors believe might be helpful for their client. It is best to focus on tasks that would help the client in public because the point of public access with a service dog is that the dog is actively mitigating the client’s disability and is therefore required. Counselors are likely to find several “bonus” tasks that would provide great additional benefit, but these are best added once it is clear that a service dog is necessary for the client to successfully function independently in public places.

Working with prospective handlers

In assessing whether a service animal is a good fit for a client, a simple first test is to ask:

1) Is my client disabled under the definition set forth by the ADA?

2) Is my client a suitable candidate for a service animal?

3) Are there trained tasks a service dog could perform that would help mitigate my client’s disability?

Often, the first question will provide counselors with the overall answer. If the client isn’t disabled, then that person won’t be able to use a service animal. If the client is disabled, then the focus moves to the question of whether the client is a suitable candidate for using a service animal.

Some basic considerations for arriving at an answer to the second question include whether the client is physically and financially able to care for a dog, whether the client can handle major life changes at this point and the client’s overall degree of resiliency. Service dog programs agree that potential contraindications include suicide attempts by the client in the past year, severe paranoia or psychosis and any other situation that might put the dog’s safety at risk. A good candidate might have a history of bonding strongly with canines. It is also important to determine whether the client is in a stable enough position to be able to effectively use a service animal.

Then we arrive at the question of trained tasks, which is essentially, can the client be helped by a service dog? In assessing a client, a counselor might ask what the client’s disability is preventing the person from doing. A possible answer would be that the client has posttraumatic stress disorder and is hypervigilant. The client experiences flashbacks and becomes stuck in place. Sometimes the client becomes disoriented and cannot remember where he parked. Additionally, at home the client disassociates without warning and cannot get to his medication. He also has nightmares and disrupted sleep.

For this client, possible trained tasks to be used in public might include a “watch my back” command, in which the service dog would alert the handler to people approaching from behind, and a “search” command, in which the dog could search an enclosed area such as an office for other people. The dog would also be trained to respond to and eventually alert the handler to flashbacks by sensing shifts in breathing and body language or other cues specific to the client. For example, the dog could be trained to lick the handler’s face if it does not receive a response from the handler. It could also alert other known people, such as the client’s spouse or co-workers, that the client needs assistance. In responding to a flashback or other episode, the dog could be trained to lead the handler to the exit of the building, either automatically or upon receiving a “find the way out” command. In instances in which the handler can’t locate his car, the dog could be trained to “find the car” and lead the handler there.

Some bonus tasks performed at home by the service dog might include waking the handler from nightmares and retrieving medication from a known location. The dog could also use the known “search” command upon returning home if the handler was concerned that an intruder might be present. Perhaps the handler also has a secondary concern of mobility issues from knee and back problems. In that case, more mobility tasks such as balance feedback and bracing to help the handler get out of chairs could be added to the service dog’s responsibilities, along with some named items for retrieval such as “phone,” “remote” and “keys.”

This service animal would clearly be a huge comfort to the client, but we can recognize that it would be performing many tangible trained tasks beyond comfort, thus setting it apart from a regular pet or an emotional support animal. This is what justifies the animal working with its handler in public as medical equipment under the law.

Getting a dog

What steps should be taken after determining that a client would be helped by a service animal? Most handlers are best served getting their first dog from a program rather than attempting to train the dog themselves, unless they possess extensive training experience or have connections to the right people to provide the training. The organization providing the service animal will likely want documentation and a release of information from the counselor if the client’s disability is related to a mental health-based diagnosis rather than a concern that is primarily medical. Be aware that scam programs do exist. It is important to look for red flags, such as programs that want a large sum of money upfront or that won’t allow prospective clients to visit a training or to be connected with current clients.

Accreditation bodies such as Assistance Dogs International can help limit the risk in choosing an organization. These accreditation bodies assist training programs by setting standards for the required level of obedience training, thus helping to ensure that the animal will be safe to work in public. They also have agreements concerning their obligations to clients should needs change or challenges arise.

When choosing a service animal organization, clients should read and understand the contract as well as the policies and practices of the program thoroughly before committing because there may be fundraising requirements or extensive policies regarding gear, care, travel and so on. Generally, clients will have custody through an organization that maintains ownership of the dog. Therefore, it is important to ask for information concerning who makes the call on when a dog retires, whether animals retire into handler care and what the process is for getting a successor dog, in addition to all of the requirements for being a handler through the organization.

The experiences of handlers

Very little research is available on the experiences of service dog handlers. There is prevalent stigma against service animals, however. In her 2017 study of just under 500 handlers, sociologist Meghan Mills found that the majority of participants (68 percent) reported discrimination during daily tasks. Mills also reported that 77 percent of respondents indicated the legitimacy of their service dog had been questioned, and nearly half said they had not used their service dog in public “sometimes” because of unwanted attention.

The experiences of handlers appear to be affected by factors such as gender, race, age and geographic location. It is common for handlers to experience negative reactions from their friends, family members and communities. This can be especially true for those with invisible disabilities who may already have the legitimacy of their illness questioned regularly. Service dogs are not as common as other assistive devices, and this can draw additional attention. The social norm in the United States of pet dogs being prohibited in most public spaces compounds this experience. Even when handlers start with strong support networks, the constant discrimination they face over time can lead either to their exclusion by others or to self-imposed isolation to avoid these experiences.

Because people tend not to understand public access laws or how to interact appropriately with service dog teams, handlers are often characterized as demanding or rude for protecting their legal rights or safety. In online service dog forums, handlers regularly ask how to be strategic about telling strangers not to distract a dog who needs to be watching for medical alert (for example, a dog trained to give early warning for a seizure). These handlers do not want to endanger themselves, but they have been told that they are being unreasonable to expect strangers not to talk to, bark at or call their dog.

New handlers in programs or on their own will practice being assertive and calm, repeating the law and educating in the face of people yelling and threatening to call the police. As a result, handlers can put unreasonable expectations on themselves and their dogs to be flawless. Handlers may be concerned that an off day or a small mistake could make their access and the access of other teams more difficult.

Working with teams

Counselors who understand the role of service dogs have a unique opportunity to model positive social interactions for handlers. Showing respect through appropriate etiquette to service dog teams is a simple step that will communicate understanding and put service dog handlers at ease.

The core of service dog etiquette is not interfering with the animal’s focus by talking to, petting or otherwise engaging the dog. In the same way one would not comment on a person’s wheelchair or cane, it is rude to focus too much on a service dog or to ask too many questions. The presence of a service dog, as necessary medical equipment, is not an invitation for conversation about the client’s disability or about service dogs (either in general or about the handler’s in particular). Handlers may be sensitive to these questions because they commonly are asked by others in inappropriate settings. As with any other client, it is best to build rapport first, then ask more probing questions once a relationship is established. In support of building a therapeutic relationship, I’d recommend that counselors say something along the following lines: “I’m not going to ask you things I don’t need to know about your service animal, but is there anything you would like to tell me about how you want me to interact with you as a team while we’re working together?” This would be a polite way for counselors to align themselves with these clients while also signaling understanding of and respect for their boundaries.

If counselors are aware that a client is a service dog handler, it is important to think in advance about the potential barriers the team may face in a counseling setting. For example, if the waiting room becomes uncomfortable because another client is being too curious or is distracting the service dog, consider whether there is another location where the client could go to wait for the session. Educating other counselors and staff in the practice on basic etiquette is also important because it removes the responsibility from the client. If a client who is a handler is going to participate in a group, spend time beforehand discussing how the client would like to be supported in setting boundaries with the other group members. This step could improve the outcome.

As previously noted, many service dog teams experience frequent discrimination. Over time, some handlers become fearful of entering new environments because of the potential of access concerns or other negative interactions. Some handlers have been threatened or experienced violence simply for having a service animal. Conflict may also result from the handler not allowing people to pet or interact with the service animal or from refusing to be illegally removed from a building. Many teams have been attacked by pet dogs or by dogs that are claimed to be service animals. It is worth counselors evaluating for trauma responses within this demographic because, over time, the constant alienation can build up, even without the experience of acute incidents.

Handlers may also have lost the support of family or friends or access to some of their spaces because of this treatment decision. Loss of access can be due to lack of ADA coverage (as is the case in religious spaces) or due to elements of specific environments in which the social cost of advocacy may outweigh the gain of access. It is important that counselors not place the burden of education exclusively on handlers and understand that in some situations, there is no clear path forward to gain access once it has been denied. This means that counseling with handlers may involve elements of grief counseling.

There are interventions used in training programs that can deepen the bond in a team and help handlers be more effective in using their service dogs. Some of these interventions target specific symptoms, whereas others address interpersonal and environmental processing through the team bond. Counselors working with long-term clients who are handlers may be served by seeking consultation and supervision in this area.

 

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K. Lynn Pierce recently started her counselor education and supervision doctoral program at Pennsylvania State University. She is a service animal handler of four years and provides consultation and workshops for mental health and related professions around service dog inclusion and integration. Contact her through her website at klynnpierce.com.

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Counseling Today reviews unsolicited articles written by American Counseling Association members. To access writing guidelines and tips for having an article accepted for publication, go to ct.counseling.org/feedback.

 

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Opinions expressed and statements made in articles appearing on CT Online should not be assumed to represent the opinions of the editors or policies of the American Counseling Association.

The therapeutic triad of disability

By Susan Stuntzner, Jacquelyn Dalton and Angela MacDonald July 9, 2018

For many counseling professionals, the exploration of forgiveness, self-compassion or resilience can seem daunting, particularly when determining ways to apply these concepts to people with disabilities and their specific needs. When approaching this task, counselors may ask themselves several questions, including: Where do I start? Which concept is most important? Is one of them more relevant for this population? How can I best help people explore one or all of these concepts? Good questions indeed but not always easy ones to answer.

To help counselors understand each of these concepts, the three authors of this article developed a model called the therapeutic triad of disability. The therapeutic triad provides counselors a means with which to consider one or all of these approaches as a gateway to healing and a pathway to hope for clients.

A personal search for therapeutic approaches

Susan Stuntzner’s experience: I am the director of disability services at Southwestern Oregon Community College and a lecturer for the University of Texas Rio Grande Valley. I have lived with a visible disability for more than 30 years.

In the summer of 1985, I broke my back and found myself paralyzed from the waist down. I was life-flighted to Sacred Heart Hospital in Eugene, Oregon, to undergo emergency surgery. Prior to the surgery, the attending physician told me that I would never walk again. Putting his pronouncement aside, I thought to myself, “Hmmm, maybe, maybe not. Time will tell.”

Following surgery, I was in Sacred Heart for two months while I underwent physical therapy and learned to walk with the assistance of below-the-knee ankle-foot orthotics. Over those two months, I had a lot of time to think about my predicament, how the course of my life had changed and the road ahead of me. I remember having an innate sense that my life would never be the same, that I could not go back to my “old life.”

At the same time, I found myself feeling a sense of hope. I was already anticipating that my life would be filled with new adventures, personal growth, challenges and possibilities. I can’t explain why I felt this way, but I distinctly remember seeing myself at a vital fork in the road, and now my life purpose was to take the “left road” instead of the one on the right. Perhaps this was the start of resilience and the very beginning of great things to come.

Over the next several years, I was faced with a number of experiences that I wasn’t prepared for, nor did I understand them at the time. Most of these experiences could be filed under what we know of today as negative societal attitudes toward people with disabilities: inaccurate beliefs, low expectations, bias, discrimination, oppression and a lack of equitable access to the opportunities and resources enjoyed by people without disabilities. This was a time when no one really discussed the experience of disability or the impact of society and barriers on people with disabilities. As a result, the process of figuring out what I was experiencing or what I should do was ambiguous at best.

That may not be easy for some readers to hear, but I share it because all of these experiences set the stage for what was to come. I just didn’t know it yet. It wasn’t until about a decade later, while I was a master’s student in Portland State University’s counseling program, that I formally learned about the realities and impacts of societal attitudes toward people with disabilities, the coping and adaptation issues that people with disabilities often experience and the changes in relationships and expectations that this population frequently faces. It was at this point that my personal experiences finally “had a face.” I could look at my personal experiences and better understand why life was now very different from a societal perspective.

Jacquelyn Dalton’s experience: I am a rehabilitation counseling educator, and I have had my own experience of living with a disability. However, my story is one of progressive hearing loss and the challenges and difficulties that come with that. I grew up in the “hearing world” but became profoundly deaf in my mid to late 20s. When I was in my late 30s, I pursued and received bilateral cochlear implants. Because of these implants, I am able to hear and to re-enter the world of the hearing person. However, this was not the end of my experience with disability.

Throughout this time, I worked hard to figure out where I fit in the world. My situation was one in which I wasn’t accepted by the culturally or functionally Deaf population, nor did I fit neatly into the hearing world. As time passed, I sought out other means of coping and adapting to changes brought on by my hearing or my lack thereof. I too witnessed the face of societal bias, inaccurate perceptions and the overstepping of personal boundaries.

Some of these issues were readily noticeable the moment I acquired a service hearing dog named Ainsley. Although providing a vital service and need, Ainsley suddenly made my hearing loss “visible” to the outsider and onlooker. With this experience came the presence of well-known issues that most people with disabilities encounter: strangers staring or gawking at them, invasive personal questions, unkind remarks and social intimidation tactics. To cope with these unexpected and difficult experiences, I began my own journey of exploration, which led to the discovery of mindfulness, meditation practices and Buddhist teachings.

What is the therapeutic triad?

The therapeutic triad of disability is a model and an approach to counseling that comprises three specific components: forgiveness, self-compassion, and resilience. Those who have embraced it have described it as a lifesaving strategy. People have told us that the therapeutic triad helped them move from a place of despair, darkness, anxiety and uncertainty to one of strength, hope and self-confidence. Through the therapeutic triad, these individuals discovered the power of forgiveness, self-compassion and resilience — and the interconnectedness of each component — on a journey of self-growth and personal healing.

So, how did the therapeutic triad come about? In 2012, Susan was looking for a way to expand the use of forgiveness among people with disabilities. This led her to the exploration of forgiveness as a potential component of resilience. Not seeing a lot available on either component in relation to people with disabilities or as part of an integrated approach, she started to work on it.

One outcome of this exploration and research process led to the development of Susan’s second book, Reflections From the Past: Life Lessons for Better Living. The book looks at a number of specific resilience-based strategies that people can use in everyday life. Each skill is categorized and housed within a specific resilience domain to help readers better understand the connection. Some of the skills presented focus on spiritual practices and forgiveness.

From there, an opportunity presented itself to Susan to explore the applicability of self-compassion to the field of rehabilitation counseling and to the process of counseling people with disabilities. Soon thereafter, she participated in one of Kristin Neff and Christopher Germer’s intensive trainings for individuals wishing to delve deeper into the therapeutic value and vitality of self-compassion. Neff and Germer are co-founders of the Center for Mindful Self-Compassion.

Occurring simultaneously, yet unknowingly, with Susan’s experience, Jacquelyn was undertaking her own personal exploration of mindfulness, meditation, compassion and self-compassion. Her life experiences led her to consider Buddhist practices, with some of her initial work being influenced by scholars such as Sharon Salzberg, Ron Siegel, and Pema Chodron. As part of these studies, she became mindful of the importance of compassion, acceptance and forgiveness in people’s lives. Later, she added to this understanding by familiarizing herself with Neff’s work and attending one of her workshops on self-compassion. Each of these pieces helped Jacquelyn better understand the interconnectedness between mindfulness, compassion, forgiveness and resilience, which she later started to apply to disability, trauma and other life challenges.

Angela MacDonald, a licensed mental health specialist and clinician at Frontier Behavioral Health, journeyed through her own experiences and exposure to forgiveness, self-compassion and resilience as part of her education and counselor training.

Throughout our individualized paths, we started to see the interconnectivity between these three therapeutic skills and approaches and, thus, the therapeutic triad of disability was developed. Each component of the therapeutic triad — forgiveness, self-compassion, resilience — is a portal or gateway to therapeutic healing and serves as a pathway to the other components. This is because people often begin therapeutic work in one area, only to discover that they could benefit from looking at other issues that are better addressed by one of the other two components.

For example, as part of their collaborative resilience intervention research, Angela and Susan have exposed people with various disabilities to a 10-week resilience-based skills intervention, “Stuntzner and Hartley’s Life Enhancement Intervention: Developing Resiliency Skills Following Disability” (developed by Susan in collaboration with Michael Hartley of the University of Arizona). Over the course of 10 weeks and 10 different modules, these individuals learned and applied specific resilience-based skills to their lives. Modules six and seven focused on forgiveness and self-compassion, respectively. While learning about these skills, many individuals became acutely aware of their need to work on forgiveness and self-compassion as key components to their healing, making them willing to explore one or both at a later date.

Angela regularly works with numerous people, individually and in a group context, on resilience and forgiveness. She witnesses people become more open to forgiveness after doing some initial work on resilience or sees people recognize the need for self-compassion after they have started learning how to forgive. It is amazing to watch people grow and draw from all three components as part of the therapeutic experience.

The benefits

People who practice forgiveness, self-compassion or resilience will experience a number of benefits, some of which are unique to that particular component and some of which overlap with the other components. To give counselors an idea of the benefits that these three components offer, let’s first consider some of the similarities.

The therapeutic triad, regardless of where people begin, affords clients the opportunity to increase their self-insight into the thoughts, feelings and choices that they have and make. As a result, clients may come to recognize that they engage in thoughts, feelings and behaviors that are not helping them heal or move forward. When this happens, people can decide what they are going to do instead.

An example of this was evident in the resilience intervention work that Susan and Angela conducted. By the third week of the intervention on resilience-based skills, participants had covered the meaning of resilience, the role of attitudes and beliefs, and the role of locus of control. It was during this time that a group member said, “You know? These exercises are really helping me see how I think and feel. I had no idea that I harbored this much negativity and that I talked to myself this way.” When the group member shared this insight, we asked him to be “kind and accepting” of his personal discovery and to realize that he also now had an opportunity to do something different.

Forgiveness, self-compassion and resilience can be used to help people reduce negative thoughts (e.g., mental rumination, self-judgment, critical thinking) and feelings (e.g., anger, anxiety, depression, hostility), diminish fears and decrease negative psychological reactions to the disability. They can also help people heal emotional hurt, feel less socially isolated and more connected to others, improve social relationships (including the relationship that people have with themselves), improve self-esteem, find hope, develop the ability to sit with their pain, and be kinder and more accepting of themselves.

In addition, each of these components may be a portal to another. For instance, when people work on forgiveness, they often realize they are not self-compassionate; thus, it provides a way to start working to change that. If resilience is the starting place, people often discover an accompanying need to work on forgiveness or self-compassion.

Jacquelyn has made similar observations pertaining to the interconnectedness of these skills in her work with military veterans. One veteran with posttraumatic stress disorder who is recovering from alcoholism told her, “The VA [Department of Veterans Affairs] tells you about resilience, but no one really shows you how to do it. It was not until you gave me information on self-compassion that I started to feel better. It was through this exposure to self-compassion that I then realized that some work on forgiveness was in order. I now see that the more I work on self-compassion, the more forgiveness I am able to experience.”

Overcoming barriers

Counselors working with people on the therapeutic triad have some options in the ways they can explore and address the barriers that people encounter as a part of the triad process. Like the benefits that people encounter, some of the barriers may be similar across the therapeutic components, whereas others will likely differ. Thus, counselors may want to consider which approach is best tailored for each person’s needs and situation.

For instance, some may decide to use an educational or more formalized approach in exploring and discussing potential barriers. Such an approach may be particularly useful in psychoeducational settings or as part of group counseling. Others may decide to use the exploration of barriers as a key feature of preparing clients for work on forgiveness, self-compassion or resilience. Still others might address “barrier identification” work on an individualized level and discuss them as they surface in the counseling relationship.

Susan and Angela, as part of their individualized and collaborative work, constantly revisit which approach works best for the situation, the person and the therapeutic context. In their collaborative group work, they have used a combined educational and self-assessment identification process. In the group setting, they typically educate group members about some of the barriers that people experience when working on a skill such as forgiveness, self-compassion or resilience. This is followed by the opportunity for group members to self-assess and explore their own personal barriers.

Susan and Angela have found that this combined educational and self-assessment identification process helps people realize that it is OK to encounter some kind of barrier. People learn that barriers are part of the human condition and their presence does not warrant adding additional layers of shame, guilt or self-criticism to a person’s self-concept. In the end, people are empowered to make a choice to do something different. To help counselors better understand the plethora of barriers people may experience as part of the therapeutic triad, we will provide some examples.

When exploring forgiveness, it is often difficult for people to ask for help in learning to forgive. Forgiveness is difficult because it is a personal process in which people are asked to face and address deep hurt and painful experiences. This process is compounded by the fact that some people believe that forgiveness is for the “weak” or that it is too hard to achieve. Others mistakenly believe that forgiveness is only for people who are religious or spiritual. Still others find it hard to forgive because they cannot “let go” of the pain or because they harbor feelings of blame toward themselves, others or God.

People commonly experience barriers in the cultivation of self-compassion when they hold on to negative thoughts and feelings, have difficulty letting go of the past or engage in critical or judgmental thinking about themselves. Some people cannot find their way to a self-compassionate way of life because they spend most of their time thinking only of themselves, feeling sorry for themselves or believing they do not deserve self-compassion.

Because of the nature of resilience and the reasons that people find themselves attracted to it, the barriers encountered may be different than those encountered for forgiveness or self-compassion. Part of this is because people tend to work on resilience following a life-changing or traumatic event, not when life is going well. Some common barriers include:

  • Believing a situation or event is unfair and that the choices you make will not result in a difference
  • Blaming other people for your situation
  • Feeling that you do not deserve what is happening to you, especially when you have done all of the “right” things
  • Continually asking “why” something is happening rather than working on potential solutions

Therapeutic strategies for skill cultivation

Counseling professionals interested in pursuing forgiveness, self-compassion or resilience work with clients are encouraged to consider a few initial questions, followed by employing some strategies as part of the therapeutic relationship.

  • Which of these — forgiveness, self-compassion or resilience — is most relevant to the person’s situation?
  • How do these skills relate to the person’s experience of living with a disability and its associated life changes?
  • Does the person seem more receptive to one of these approaches than the others?
  • What beliefs or practices does the person have or follow that can aid in this exploration?
  • In the given situation, which of the skills is most important for positive coping and adaptation to disability?
  • How can I help the person start on one area and use it as a portal for healing in another?
  • Do I cover each of these skills separately or as an integrated part of an intervention?

Professionals who are counseling clients with disabilities can choose from a number of strategies, especially given the multiple paths for cultivating forgiveness, self-compassion and resilience. The key is to find those that work for the person and that are relevant to the individual’s experiences. As previously mentioned, each of these skills often opens the door to another, so there is no one right place to begin.

Having said that, Susan and Angela have found that it often helps people to consider forgiveness and self-compassion after doing some initial work on resilience. Part of this may be because many of those with whom they have worked were exposed to forgiveness and self-compassion while learning resilience-based skills. As part of the process to build resilience, people often realized their need to work on the other two components.

Counselors may elect to work with people individually, in groups or in a way that accesses some of both. Counselors can approach the therapeutic triad from a psychoeducational approach, an intensive therapeutic approach or a specific counselor theory. They can also infuse techniques such as educational topic sessions, self-assessments/insight-driven exercises, bibliotherapy, specific exercises geared toward skill cultivation, interventions, meditation and spiritual practices, writing and reflection exercises, and therapeutic homework.

 

 

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To learn more, visit The Thoughtful Counselor podcast archives (thethoughtfulcounselor.com/all-episodes/) for a two-part conversation that Mike Shook facilitated with Susan Stuntzner and Angela MacDonald about the intersections of disability and forgiveness, self-compassion and resilience (episode dates: Feb. 17 and Feb. 21).

 

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Knowledge Share articles are developed from sessions presented at American Counseling Association conferences.

Susan Stuntzner is the director of disability services at Southwestern Oregon Community College and a lecturer for the University of Texas Rio Grande Valley. She is a licensed professional counselor (LPC), licensed mental health practitioner, certified rehabilitation counselor (CRC), national certified counselor (NCC) and board certified telemental health provider. Contact her at susan.stuntzner@socc.edu.

Jacquelyn Dalton is an assistant professor in the Texas Tech University Health Sciences Center within the Department of Clinical Counseling and Mental Health. She is a CRC and an NCC.

Angela MacDonald is a licensed mental health specialist and clinician at Frontier Behavioral Health. She is an LPC, CRC and NCC.

 

Letters to the editor: ct@counseling.org

 

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Opinions expressed and statements made in articles appearing on CT Online should not be assumed to represent the opinions of the editors or policies of the American Counseling Association.

 

Behind the Book: Group Work With Persons With Disabilities

By Bethany Bray March 6, 2017

Group counseling can serve as a powerful antidote to the isolation clients often feel, whether they’re going through infertility, addiction or a range of other issues. This can be especially true for clients with disabilities, say Sheri Bauman and Linda Shaw, co-authors of the American Counseling Association-published book Group Work With Persons With Disabilities.

“For persons with disabilities, being in a group with others who have the same challenges can reduce the sense of isolation that often accompanies such circumstances,” they write in the book’s introduction. “… When members encounter others at different stages of dealing with an issue, they may develop a sense of hope that they, too, can make progress and feel more satisfied and fulfilled. For those whose disability may limit their opportunities to join with others, the feeling of cohesiveness that develops in groups can provide that sense of belonging that is so essential for optional human functioning.”

Bauman and Shaw are both professors in the University of Arizona’s Department of Disability and Psychoeducational Studies. They collaborated to write Group Work With Persons With Disabilities to use in a course they co-teach on group work.

 

Counseling Today sent them some questions, via email, to learn more:

 

The group dynamic in and of itself can be a powerful counseling tool. Please talk about how this can be the case, particularly, for clients with disabilities.

The therapeutic or curative factors in groups are well known. It’s not unusual for people with disabilities, particularly newly acquired disabilities, to feel that their experience is unique and that their disability can be socially isolating. Consequently, the following curative factors may be of particular relevance for persons with disabilities: universality (realizing one is not alone in their struggles); instillation of hope (seeing other members who are living full and productive lives, despite myths and misconceptions about disability); cohesiveness (the feeling of belonging that develops within a group); interpersonal learning (discovering, through group feedback, how others see them; having the opportunity to practice new skills in a safe environment); and the imparting of information (learning practical medical management skills and information about negotiating social and physical barriers in their environments). There are others but these are particularly relevant.

 

What would you want counselors to know about this topic — Especially counselors who may not have encountered it in graduate school?

Regardless of a counselor’s specialty area of practice, it is highly likely that sooner or later people with disabilities — who are about 20 percent of the population — will seek services from them and just like any other clients, many will be potential group members. People with disabilities have all the same kinds of issues any other person may have, so it is likely that they will appear in groups with a variety of themes. Often when people with disabilities seek assistance from a counselor, there is a tendency on the part of the counselor to assume that the disability itself is the source of the problem. Counselors should guard against the tendency to do this, as the issue may or may not be related to the disability. Just as they would approach any other client, the counselor must see and address the needs of the whole person. Including questions that invite discussion about disabilities (some are invisible) in screening interviews will alert the counselor that some accommodations may be needed, and give the counselor the opportunity to seek out additional information if unfamiliar with the needs of individuals with this particular disability as it applies to group participation. Although people’s disabilities are an important aspect of their identity, they are more than their disability. In our book, we provide counselors with background information and specific skills that will allow them to conduct groups with this clientele successfully.

 

In your opinion, what makes counselors a “good fit” for leading groups with clients with disabilities?

A counselor who is sensitive to diverse groups will be able to bring that sensibility to include persons with disabilities. Counselors who are able to reflect on their own potential biases and fears will bring honesty to the experience and serve as important role models to other group members. Counselors also need to be open to learning additional information that would increase their comfort level and competency in working with diverse group members, including those with disabilities.

People with disabilities are not different from other group members. Just as in working with any diverse group, having an understanding of the particular needs of these members is an important area of cultural competence.

 

Do you feel that, in general, counselors might have misconceptions or gaps in knowledge about group work with clients with disabilities?

Just as in the general population, persons with disabilities are often overlooked and misconceptions are common. Generally, people without disabilities tend to believe that disabilities have a much more negative impact on quality of life than do people with disabilities themselves, and they may see “successful” people with disabilities as heroic or especially admirable. Additionally, many people assume that the most important life task of a person with a disability is to “overcome” their disability. In point of fact, many people with disabilities see their disability as part of the natural diversity of people, and that the problem is not so much the disability itself, but rather the barriers to full participation in life created by physical and attitudinal barriers. Adjustment to disability is seen as a social, rather than a personal problem.

Many counseling training programs touch on disabilities only tangentially, and thus indirectly convey the message that this is not a group that counselors will encounter in their practices, unless they specialize in disabilities. The reality is that persons with disabilities may have relationship problems, financial problems, stresses, depression and all of the same kinds of concerns that bring nondisabled people to groups.

 

What advice would you give to a counselor who might want to refer a client to a group? What should they keep in mind? How can they find an appropriate group in their area?

Groups provide many opportunities for growth for persons with and without disabilities, as well as for the counselor. Groups offer many advantages over individual therapy, such as the chance to learn and practice new skills in a safe environment, to receive feedback from others, to learn from others’ experience, to develop relationships, etc.

Counselors referring a person with disabilities to a group should prepare the client just as they would any client when making a referral. In our book, we discuss a number of screening considerations, such the advantages of homogeneous vs. heterogeneous groups, which may be important in finding a good match for the client’s present needs. Logistical issues may also be important to consider, such as access, availability of public transportation, etc. These issues are discussed in detail in our book.

Be careful to avoid making assumptions about what a client can and cannot do; counselors sometimes underestimate the potential of clients to benefit from the group experience. The best expert on the client’s abilities and needs is the client him or herself.

 

What inspired you to collaborate and write this book?

[At University of Arizona,] we have graduate counseling programs in both school and mental health and rehabilitation specializations, and we both teach sections of a group counseling course that is required of students in both programs. When planning for this course, we were unable to locate a suitable supplementary text to address this important topic – so we wrote one! Additionally, we wanted to provide a resource to practicing group counselors who may feel that they would benefit from increasing their knowledge about disability and wish to expand their capacity for cultural competency and inclusiveness.

 

 

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Group Work With Persons With Disabilities is available both in print and as an e-book from the American Counseling Association bookstore at counseling.org/publications/bookstore or by calling 800-422-2648 x 222

 

Sheri Bauman and Linda Shaw will be signing books at ACA’s 2017 Conference & Expo in San Francisco on Friday, March 17 from 1 to 2 p.m. Find out more at counseling.org/conference/sanfrancisco2017

 

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About the authors

Sheri Bauman is professor and director of the counseling graduate program in the Department of Disability and Psychoeducational Studies in the College of Education at the University of Arizona. She has a background in public school counseling.

Linda Shaw is professor and department head in the Department of Disability and Psychoeducational Studies at the University of Arizona. Her background is in rehabilitation counseling; she is a licensed mental health counselor and a certified rehabilitation counselor and was a member of ACA’s Code of Ethics Revision Task Force in 2014.

 

 

 

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Bethany Bray is a staff writer for Counseling Today. Contact her at bbray@counseling.org

 

Follow Counseling Today on Twitter @ACA_CTonline and on Facebook at facebook.com/CounselingToday.

 

 

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Opinions expressed and statements made in articles appearing on CT Online should not be assumed to represent the opinions of the editors or policies of the American Counseling Association.

 

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Retaining family focus

By Laurie Meyers September 23, 2015

“Rose” and “Steve” came to American Counseling Association member Laura Marshak for couples counseling because they felt they had been growing further and further apart ever since their son, “Sammy,” who was now in elementary school, had been born with cerebral palsy. Out of necessity, Retaining-family-focusSteve had become the primary breadwinner for the family, while Rose left her job to provide the extensive care that Sammy required.

Over time, Steve buried himself in his work, while Rose handled Sammy’s daily needs. She shuttled Sammy to his appointments for speech therapy, physical therapy and other specialized services and also took on the task of petitioning Sammy’s school for an Individualized Education Program. Rose felt she was doing all the heavy lifting and resented Steve because she thought he wasn’t helping enough with Sammy’s care. Steve, on the other hand, thought Rose didn’t appreciate how hard he was working to secure their financial future. Angry and resentful, they rarely spent time together as a couple, says Marshak, whose specialties include counseling parents of children with special needs as part of a group practice in Pittsburgh.

“They said it was too hard to find a qualified baby sitter who could handle their son’s medical complications,” recounts Marshak, who is also a counseling professor at Indiana University of Pennsylvania. “In reality, they did not have much to say to each other anymore and had lost an intimate connection.”

According to Marshak, the author of the recently published book Going Solo While Raising Children With Disabilities, Rose and Steve’s story is not unusual. Instead, it is an all-too-common experience shared by many other couples who have children with special needs.

As loved and wanted as these children may be, the unavoidable extra care they require can take a toll not just on parents but also on siblings and the family as a whole. When a child has special needs — whether physical, medical, intellectual, emotional or educational — parents may find it necessary to alter virtually every facet of family life. For these families, it can sometimes seem as if every resource, from time to money to even patience, are continually at risk of being exhausted. Depending on the severity of the child’s disability or special circumstance, the family may need access to intensive medical, health or other services such as occupational or speech therapy; specialized education and possibly job training; and help with daily tasks that other families may take for granted, from basic hygiene to learning and applying social skills.

Because efforts are understandably focused on navigating the day-to-day and moment-to-moment challenges of addressing their child’s special needs, another very important need can often get pushed to the side: maintaining the overall health and well-being of the individual family members and the family unit as a whole. Parents can struggle to take time for themselves while caring for their children. Marriages and partnerships can be tested or neglected. Siblings might struggle to cope with disparate levels of parental attention, feeling they have been left to face life’s challenges on their own. That’s why counselors can play such an important role in helping these families not just meet the special needs of their children, but also attain a better sense of equilibrium.

Addressing behavioral issues

Charmaine Solomon, a licensed professional counselor (LPC) and sole practitioner in Plano, Texas, says that when families of children with special needs come to see her, they are generally looking for help with the day-to-day issues. One issue that comes up frequently is discipline.

“Families with special needs children struggle to discipline in an appropriate manner,” Solomon says. “Because the child has special needs, they [the families] feel like they can’t hold them accountable.”

Solomon, a member of the Texas Counseling Association, a branch of ACA, has a now-grown son who suffered a traumatic brain injury as a child that left him disabled. This personal experience has informed her counseling practice. One of Solomon’s areas of focus is working with children and adults who have special needs such as autism and intellectual disabilities. She is also one of the founding members of My Possibilities, a continuing education day program for adults with special needs located in Plano.

Considering everything else that the parents may be struggling to manage, a child’s acting-out behaviors may seem like a relatively minor problem, particularly when the child is young, Solomon says. However, as the child gets older, this lack of discipline may become virtually unmanageable or, in some cases, even lead to violence, she notes.

Parents who focus on punishment when their child with special needs is acting out or showing aggression may find themselves locked in an escalating punishment cycle until seemingly the only solution left is to ground the child for life, says Erik Young, an LPC in West Chester, Pennsylvania. He has worked with individuals with special needs and their families for the past 20 years, including in a rehabilitation center, a life-skills training organization, a behavioral health care organization and, for the past four years, as a private practitioner. Young and his wife have also provided foster care for several children with special needs.

When parents come to Young for assistance with their children’s behavioral problems, he helps them develop a behavioral plan, which will vary according to the child’s problem behavior and capabilities. For example, many children with intellectual disabilities possess poor verbal communication skills, and their inability to communicate effectively may be part of the behavior problem, he says. Young frequently works on communication skills with the child and parents, giving the child a book or tablet device with pictures that the child can use to indicate what he or she wants.

Discipline strategies will vary from child to child, says Solomon, but should typically focus on reward and reinforcement rather than exclusively punitive measures. For example, parents should focus on what the child really enjoys, such as spending time on an iPad, and start by setting a time limit on the activity, Solomon explains. If the child displays the desired behavior, the limit will be increased, but problematic behavior will result in decreased time with the pleasurable activity, she says.

When appropriate, Young likes to use cognitive behavior therapy (CBT) to uncover what the trigger or cause of the child’s behavior problem might be. Conversely, it may be that a child’s behavior is not truly problematic but is simply angering or frustrating to the parent for some reason, so he will also use CBT to help the parent understand why. Young will then develop a behavioral plan that may include teaching the child and parents strategies for anger management, emotional regulation and so on.

Robert Jason Grant, an LPC and sole practitioner in Nixa, Missouri, also works with both the child (mainly children who are on the autism spectrum) and the child’s parents to explore factors that contribute to behavioral issues. For instance, he explains, punishment for certain behaviors isn’t successful with children who have autism because these children engage in impulsive behavior.

“[The behavior] is not thought out and may even be a surprise to the child,” says Grant, a member of ACA. “They may not even have time to think about consequences.”

Instead, Grant says, behavioral work should focus on what is causing or contributing to the problem. Because children with autism typically possess little or no ability to regulate emotions or process sensory input, emotional and sensory dysregulation are often the main contributing factors to these children’s discipline problems, he says.

“What tends to create dysregulation, and how do we change that?” Grant asks. “Is it environmental? Do we need to provide sensory breaks? … A sensory break could be something as simple and basic as a private quiet room, let’s say in school, where the child can go to be by [himself or herself], with no other people and no one coming to talk.”

Sometimes, all these children need is to “reset,” Grant says, and that can take as little as 10 minutes.

Grant also works with children and parents to tackle the dysfunction head on. He has designed a specific approach that he calls AutPlay, which is a combination of behavior and play therapy for children who have autism. The play therapy tools he uses include objects such as weighted vests, weighted balls and other sensory toys because children who are on the autism spectrum find these items soothing, he says. Parents can use these toys at home to continue the therapy, and that is important because dysregulation requires constant maintenance, he says.

The benefits of effective discipline go beyond managing specific behavioral issues, Solomon says. When parents discipline a child who has special needs, they are teaching him or her how to tell right from wrong and also how to accept instruction, she asserts. Knowing how to make decisions and how to follow instructions contribute to a child’s sense of independence, adds Solomon, who believes that parents should always be working toward increasing the child’s level of independence.

For instance, some children with special needs may require help feeding or dressing themselves beyond the age that is typical for completing those activities independently, Solomon says. Although it is often easier to continue to dress and feed a child who has difficulties, parents should keep working toward teaching the child to do these things on his or her own, she asserts. Solomon acknowledges that this process can take a little — or a lot — longer, but in many cases, she says, the child will eventually have the capability to do it. The same holds true for many other self-care and independent activities that will ultimately benefit the child, she says.

Letting children with special needs do everything they are able to do can also bolster their self-image, says Susan Stuntzner, an assistant professor in the School of Rehabilitation Services and Counseling at the University of Texas, Rio Grande Valley. On the flip side, automatically doing everything for a child who has a disability can send negative messages about his or her capabilities and value and also create a sense of learned helplessness, she says.

Family needs

As children become more self-sufficient, this generally eases the pressure on parents. But parents of children with special needs sometimes come to believe that they are the only ones who can — or should — provide adequate care for their child, Solomon says. Unfortunately, being constantly on call, and with no relief in sight, tends to only cause more problems, she says.

Young says that although families may initially come to counseling for help with a specific problem such as discipline, he also probes for any other stressors with which the family is having difficulty coping, either as a group or individually.

There really is no way to fully prepare for the needs of a child with a disability until you have to do it, he says. Families are suddenly faced with the need to obtain — among other things — health, medical and disability services, Young explains. Further complicating matters is the fact that there is no one central place to obtain services. Disability and educational assistance vary from state to state, and health and medical services are usually secured through insurance plans with varying levels of benefits, Young and Solomon point out.

In addition to coordinating outside services, parents must come up with a plan for meeting the child’s daily needs, Young says. Children with special needs may require additional help with daily activities such as getting dressed or even eating. Children with disabilities may need constant care, meaning someone has to be watching them at all times, Young adds. This means spouses and families may have to engage in tough discussions and make significant compromises. For instance, who stays home to provide care to the child? Who will be on call to take the child to any therapy that he or she might require? To address these needs, one parent will often stop working, which can creates an additional source of stress: money and finances.

Caring for a child with special needs can be a 24-hour job that many families assume they can and should engage in alone, Solomon says. But if all of the family’s time and attention is spent on taking care of the child, who is taking care of the family?

“Oftentimes, families are trying to figure out how to tend to their family member’s needs and concerns to the point that they forget they have their own set of needs,” says Stuntzner, an ACA member who also writes and speaks about living with a disability. “As a result, families … may experience personal or caregiver burnout.” In fact, if parents consistently ignore their own needs, they may eventually grow resentful of how much help their child requires, she warns.

Young works with families who are dealing with a child’s special needs or circumstances to help them recognize that they don’t have to do it alone and that resources are available to them. He points out that he, or any other counselor, can offer the family a neutral source of support — someone to talk to who doesn’t have any kind of emotional attachment or agenda but understands what the family is going through. Because Young also has connections (from his time working in a rehabilitation center and a behavioral health care organization) to state and local agencies that help provide services, he can point these families in the right direction. He even keeps a binder of business cards that he has gathered over time, based on personal or client experience, for tradespeople such as plumbers and handymen who are used to coming to homes with children with special needs and who won’t be disturbed by outbursts or other behaviors that might be regarded as outside the norm.

A system of support

When Grant works with parents of children with autism or other special needs, he always emphasizes the importance of self-care. He teaches parents how to conduct a self-care inventory so they will start actively thinking about caring for themselves.

Encouraging family members to engage in self-care sometimes requires a shift in perspective. For instance, self-care can mean something as small as taking a few moments during the day to indulge in something the individual really enjoys, Young notes. “Instead of a week on the beach — because that’s probably not going to happen — what can they do during the day? [It’s] just little moments that can be refreshing,” he says.

When a child is born with special needs, becomes disabled or is diagnosed with a disorder, Young says, it is common for extended family members and friends to draw back at first, often because they feel like outsiders and aren’t sure what they can do to help. So Young encourages families who have a child with special needs to actively reach out to others, explaining that maintaining a solid social network is crucial for both emotional and practical support.

“I often take my clients through the process of listing all potential resource people — no matter how disconnected — and talk about what they might be able to contribute,” he explains. “Then we go about ‘recruiting’ them so to speak. Find ways to utilize their talents and, thus, spread the stress. People generally want to help when they can. They may just need guidance.”

That’s why Young tells these families to let their networks know what they need specifically. “Take an executive role. You are president,” Young urges his clients. “These people are your Cabinet, your advisers. Make sure you’re getting them to do what you want.”

With a support network, parents can also build a system of respite care. Once a child is used to being with a caregiver, the parents can take breaks, possibly even getting away for a day trip or weekend vacation, Solomon says.

Sometimes families won’t seek any kind of support because they feel ashamed of their struggles, Solomon says. Rather than isolate themselves further, she encourages these clients to seek out others families of children with special needs. She suggests that parents contact local mental health agencies to find support networks.

Young says that lately he has been providing more couples counseling than family counseling because the primary issue for many of his families who are dealing with special needs is actually a problem with the parents’ marriage or partnership. The stress of caring for a child with special needs can take a particular toll on a couple’s relationship, he points out.

Solomon agrees, noting that respite care isn’t just important for parents as individuals but also as a couple. When providing focused care to a child with special needs, it can be particularly challenging to find the time or the energy to just be a couple, she says. Identifying someone who can provide caregiver support can allow couples to take much-needed time for date nights or even a short trip, she adds.

Parenting styles can also drive a wedge between couples who are caring for a child with special needs, says Young, who uses talk therapy with couples. If parents can’t agree on how best to care for or discipline their child, it creates a continual source of conflict, he says. Young helps couples learn to communicate with each other about what they want and need and how best to compromise, if needed.

“I like to use a variety of techniques that hone active listening and clear communication skills and trust,” he says. “One favorite technique I learned at an attachment therapy conference is to have the couple sit in chairs facing each other. One person communicates a brief statement, then the other person has to repeat it back. Then they switch roles. Even this simple exercise can highlight when assumptions are being made and communication is being blocked.”

Young also specifically addresses differing parenting styles with couples, such as when one partner is more authoritarian and the other is more nurturing. He works with these couples to develop a joint parenting style that is balanced — both authoritative and nurturing.

Young also works with the parents in session to practice planning for specific concerns. He asks them to think about how they were raised and how that influences the way they parent today. This exercise helps to spur conversations that can uncover differences in the way they view parenting, he says. Young then helps the couple to negotiate these differences.

Sometimes it’s not parenting style — but substance — that causes the problem. Solomon says disparate distribution of parental responsibility is often a source of tension in families managing special needs. She regularly sees mothers who take all the responsibility for caregiving — either by choice or necessity — which leaves little time for other relationships. Solomon tells her clients that parents need to share responsibility. For example, when possible, fathers should take a turn accompanying the child to therapy. If the mother is the sole caregiver during the day, the father should give her a break by taking on extra duties at night.

Marshak’s couple, Rose and Steve, offered an example of disparate responsibilities — or at least that was how it appeared to Rose. With Marshak’s help, the couple began to discuss the underlying tensions and motivations that had led them to their crisis point.

When Sammy was first born, Rose was deeply depressed and wanted to talk about her grief with Steve, explains Marshak, who co-authored the 2007 book Married With Special Needs Children: A Couple’s Guide to Keeping Connected with Fran Prezant, a speech and language pathologist and researcher on disability issues. Steve, however, preferred to avoid discussion and bury himself in his work. Rose thought Steve’s silence meant that he didn’t care about her or Sammy, but focusing on work and providing for his family was actually Steve’s coping mechanism to deal with his grief. As time passed, Rose spent her time learning as much as she could about cerebral palsy and seeking support through a network of other mothers who had children with the disease. Steve worried constantly about how to financially support his family in the present and how to make sure there would be money for his son in the future in case Sammy couldn’t support himself. So Steve worked even harder.

Guided by Marshak, the couple discussed all of these issues in counseling. Rose began to understand that work was Steve’s way of coping with his feelings of grief and worry and that even though he wasn’t sharing his grief verbally, that didn’t mean he wasn’t hurting. Steve learned to become more expressive with his feelings.

Rose and Steve also worked to re-establish their romantic connection by going out as a couple again and trying to view each other as the individuals with whom they had fallen in love — not just as Sammy’s parents, Marshak says. Over time, as they re-established their bond as a couple, they also started to adjust their roles, including sharing more of the responsibilities related to Sammy’s educational and medical needs. Rose even resumed some of the leisure activities she had given up when she felt she was solely responsible for Sammy’s care.

Speaking to siblings

When working with a family who has a child with special needs, it is also important for counselors to take time to focus on the needs of family members who may get overlooked, or at least feel like they are overlooked — siblings.

Grant sometimes works with siblings on their own so they will know they have an outlet for their struggles and frustrations. “One of the biggest challenges [for siblings of a child with special needs] is the feeling of having to take a step back, of giving up things for their sibling,” he says.

Out of necessity, the child with special needs is the family’s biggest area of focus. To the child’s siblings, this circumstance can seem not only unfair but also as if the parents are choosing to favor the child with the disability or special needs, Grant adds.

When Solomon’s son who is disabled was a child, his siblings struggled with feeling forgotten. “I had to teach my [other] sons the difference between ‘have to’ and ‘want to,’” she recalls. Solomon sat down with her sons and explained that it wasn’t a matter of wanting to spend less time with them but rather that their brother needed more of her time.

As the siblings of a child with special needs get older, they may also start to worry about or feel responsible for their brother or sister, Grant says. He regularly teaches siblings games that they can play with their brother or sister who has special needs that will help the child to cultivate specific skills. One such game is called Social Skills Fortune Tellers.

Grant teaches the “neurotypical” sibling — the fortune teller — how to make an origami structure with tented triangles that can be manipulated with the fingers so that different sides or flaps of the triangle show. Each flap holds a social skill to practice. The fortune teller manipulates the origami and reveals a skill, which the siblings then practice, Grant explains. As an alternative, the origami can also be used for emotions, he says. When a particular emotion is revealed, both the neurotypical sibling and the sibling with special needs can share a time when they felt that particular emotion or make a face that demonstrates that feeling.

Grant also uses family play therapy techniques to allow siblings — and all family members — to express how they are feeling or what they are thinking about issues such as how autism is affecting the family or how the parents are parenting. One technique is called “color my feelings.” Each family member uses a white piece of paper with a heart drawn on it. The family members color the hearts with whatever color best represents their feelings, he explains. The family members then share their hearts, allowing everyone an opportunity to talk about the feelings they are having and why they are experiencing those feelings.

Lifelong support

It is painful to contemplate, but there will come a time when the parents are no longer there to help their child with special needs, Solomon says. That is why she is adamant about encouraging her clients to plan for that future now.

Solomon tells parents that they need to consider questions such as: Who will take care of the child? What services will the child need? Where will the child live? Where will the money to pay for the child’s needs come from?

She helps parents learn what guardianship is and urges them to start planning immediately for the lifelong financial needs related to providing for someone with a disability. Solomon also notes that it is important for parents to apply for disability services well ahead of time. Once a child graduates, he or she loses any benefits, such as ongoing speech therapy, that the child’s school provides, she points out. Solomon adds that in Texas, there is currently a 12-year waiting list for state services.

Young also helps families come to grips with the reality of planning for a child’s ongoing support once the parents are gone or are no longer able, for health or other reasons, to continue providing care. Although he acknowledges it is a difficult conversation to have, he sits down with families and helps them develop a long-term plan by investigating options such as sheltered workshops and group homes. Young also emphasizes the wisdom of financial planning with insurance agencies that specialize in estate planning and special needs trusts.

From Solomon’s perspective, this planning process also comes back to encouraging children with special needs to develop as much independence as possible and teaching them skills to help prepare them for the future, just as parents do with any child.

“Just like with another child [without special needs], you ask, ‘Have you done your homework? Practiced your instrument?’ With the child with special needs it’s, ‘Did you practice doing your buttons? Did you take a shower?’” she says. It’s still homework, she adds, but homework of a different sort.

Young says it is important for counselors to empathize with parents about the challenges of raising a child with special needs. At the same time, he encourages parents to let go of the idea of what “could have been” and instead embrace the child that they have because each child with special needs also has his or her own beautiful gifts.

Stuntzner, who is also a member of the American Rehabilitation Counseling Association, agrees. “Coping well does not mean the family has not felt or experienced negatives or difficulties,” she says. “Rather, it is an indication that through the experience of a loved one’s disability, they have found a way to work with the situation so that it brings the family together instead of pulling it apart.”

 

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Additional resources

The American Rehabilitation Counseling Association, a division of the American Counseling Association, is an organization of rehabilitation counseling practitioners, educators and students who are concerned with enhancing the development of people with disabilities throughout their life span and in promoting excellence in the rehabilitation counseling profession’s practice, research, consultation and professional development. To learn more, go to the ARCA website at arcaweb.org.

The International Association of Marriage and Family Counselors, also a division of ACA, is an organization whose members help develop healthy family systems through prevention, education and therapy. For more information, visit iamfconline.org.

Other resources include:

  • “Disability Awareness,” an ACA podcast presented by Robbin Miller. To access the podcast, go to the Knowledge Center section of ACA’s website (counseling.org) and click on “Podcasts.”
  • Yes You Can!: Art-Centered Therapy for People With Disabilities, an ACA DVD presented by Judith A. Rubin. To purchase the DVD, go to the ACA bookstore (counseling.org/publications/bookstore).
  • “Autism Spectrum Disorder,” an ACA Practice Brief written by Carl J. Sheperis, Darrel Mohr and Rachael Ammons. To access this brief, go to the Knowledge Center section of ACA’s website (counseling.org), click on the “Center for Counseling Practice, Policy and Research” and then “Practice Briefs.”

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To contact the individuals interviewed for this article, email:

 

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Laurie Meyers is the senior writer for Counseling Today. Contact her at lmeyers@counseling.org.

Letters to the editor: ct@counseling.org

Focusing on ability, not disability

By Amy L. Cook, Laura A. Hayden and Felicia L. Wilczenski April 29, 2014

My junior high school teacher once told me to reach for the stars in life and said I could accomplish anything I put my mind to. Now, I really do believe this!” — Courtney Vinson’s story from Think College, a project of the Institute for Community Inclusion at the University of Massachusetts Boston

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This excerpt from Courtney Vinson’s story describes her pathway to college and the workplace despite being diagnosed with an intellectual disability (ID) and told by educators that she had limited future options.

According to the American Association on Intellectual and Developmental Disabilities (AAIDD), ID is characterized by significant impairment of intellectual functioning (IQ of 70-75 or lower) and significant impairment of adaptive behavior, with onset occurring before age 18. During Courtney’s senior year in high school, she applied and was accepted to the Pathway program at UCLA. Pathway is a two-year certificate program for students with intellectual and other developmental disabilities that offers a combination of educational, job-related and social experiences.

Pathway is just one of more than 250 college campus-based programs that are offered to students with ID. Some of these programs feature inclusive postsecondary educational options, meaning that students with ID are integrated into mainstream college classes and campus activities rather than being separated from the campus community. Courtney is now employed full time at a resort hotel and feeling proud of her achievements.

The prevalence of ID has burgeoned due to the diagnosis of autism spectrum disorder having increased by almost 300 percent during the past decade. Given the high incidence rate, school counselors need to be in position to assist students with ID in making successful postsecondary transitions. While many educators may have focused on these students’ disabilities, school counselors can recognize their strengths and encourage positive pursuit of postsecondary options.

Federal legislation, including the Individuals with Disabilities Education Act (IDEA) and No Child Left Behind, mandates educators to present students with disabilities with appropriate postsecondary transition opportunities, including “further education, employment and independent living” (IDEA). However, according to findings from the National Longitudinal Transition Study-2, conducted by SRI International (formally Stanford Research Institute), students with ID are less likely to graduate high school and achieve competitive employment than their peers without a disability.

In an attempt to close these gaps, educational institutions have increased postsecondary educational options for individuals with ID, including offering greater access to higher education through concurrent enrollment between high schools and universities. Such programs provide students with ID the opportunity to attend college and enroll in college classes, participate in college-based activities (for example, clubs, intramural sports and extracurricular activities) and, in some cases, reside on campus. Additionally, in 2008, Congress passed the Higher Education Opportunity Act with the goal of increasing accessibility to higher education for students with ID. This federal legislation has resulted in the development and implementation of inclusive college education options nationwide. The goal of these postsecondary education programs is to prepare these students for gainful employment and enhance their independent living skills.

The school counselor’s role

According to the U.S. Department of Education, the number of students with disabilities receiving federally funded special education services in public schools has increased from 8.3 percent to 13.1 percent during the past three decades. More than 463,000 children with ID are now receiving such services. Given the burgeoning population of students with disabilities and federal legislation that mandates improved higher education accessibility for these students, school counselors will increasingly be called on to share their expertise in college and career preparation and to assist in developing appropriate transition plans for students with ID.

The American School Counselor Association (ASCA) position statement on students with disabilities says that the professional school counselor’s role includes “providing assistance with developing academic and transition plans for students in the IEP,” or individualized education program. Staying aligned with the ASCA National Model, school counselors can support students with ID in achieving postsecondary educational and vocational goals in a variety of ways, including through individual and small group counseling, consultation to teachers and parents, and advocacy for children with ID.

Cognitive behavioral interventions can be used to help students with ID modify their thinking, feeling and behavior. Specifically, these interventions can be applied to help these students reduce their anxiety and increase positive characteristics that contribute to success, including development of an internal locus of control. When engaging in individual and group counseling, school counselors can use cognitive behavioral interventions to help students with ID recognize their strengths and rephrase negative thinking into positive thinking and subsequent positive self-talk. In small groups, students can help each other recognize strengths and reinforce rephrasing of negative thinking into positive thinking and self-talk. School counselors can serve as group facilitators by praising rational and positive self-talk when it is displayed, while providing a safe and calm environment for these students to share their concerns and feelings about postsecondary transition. For example, school counselors can help students with ID to identify negative feelings or self-talk (for example, “I don’t think I can succeed in college”) and turn it into positive feelings or self-talk (“I know I can succeed in college because I have sought help when I’ve needed it in high school”). In addition, school counselors can provide these students with tangible steps for reframing negative comments (for example, “Identify one way you have been successful in school in the past”).

School counselors can provide consultation to teachers and parents concerning the current needs of students with ID. This might include offering guidance on how to identify those needs (understanding the defining characteristics present in children with ID), and preparing and sharing material that identifies learning strategies that are helpful for students with ID. It might also include facilitating and delivering workshops with guest speakers who can share strategies to help support adolescents with ID with their postsecondary educational and vocational goals.

As students with ID are preparing to graduate from high school, school counselors can also emphasize to teachers the importance of providing these students with emotional encouragement and strength-based feedback that communicates a belief in their ability to succeed. The more information school counselors can share with teachers and parents, the higher the likelihood that students with ID will be properly prepared to face the challenges of the final year of high school, make appropriate postsecondary plans and feel supported throughout the transition.

Counselors can also promote awareness of the unique needs of this population by advocating on their behalf with current teachers, university admissions committees and future employers. When writing letters of recommendation, counselors can highlight the strategies these students have used to succeed academically — strategies that will further benefit them as they pursue their postsecondary educational goals.

Postsecondary educational options

A variety of postsecondary educational opportunities are available for students with ID. School counselors can collaborate with special educators, parents and school psychologists to ascertain students’ needs and ensure an appropriate fit when exploring postsecondary options. Options range from separate programs held on college campus grounds wherein students with ID take courses separately from their mainstream peers, to inclusive programs that permit students with ID to enroll in or audit regular college classes, participate in college activities/clubs and intramural sports and, in some cases, reside on campus. For students residing nearby a higher education institution that supports students with ID, opportunities may also exist for concurrent high school and college enrollment. Currently, eight higher education institutions across Massachusetts have formed partnerships with roughly 40 high schools in which students with ID are offered the opportunity to attend college while completing their high school education. Through these partnerships, students acquire a deeper understanding of interest areas related to their career goals, develop self-sufficiency in negotiating the complexities of the university and broaden their social contacts and use of free time.

For example, the Inclusive Concurrent Enrollment (ICE) Partnership Program at the University of Massachusetts Boston (UMB) aims to improve opportunities for postsecondary education for students with ID. This initiative involves inclusive concurrent enrollment for high school students ages 18-22 who are receiving special education in high school. Educational coaches from the high school facilitate the transition to the postsecondary setting. The students with ID are enrolled in college courses, which they either audit or take for credit. Their career development is fostered through job shadowing, paid and unpaid internships, and integrated competitive employment.

UMB staff collaborated with educational coaches from Boston Public Schools (BPS) to implement this program through a grant from the Massachusetts Department of Elementary and Secondary Education. During the fall 2012 semester, seven BPS students participated by auditing classes based on their interests — for example, creative writing, art history, sociology and so on. Five of these students completed the courses. During the spring 2013 semester, seven additional students from a nearby city enrolled in courses of their choosing. Additionally, a mentoring program pairing students in the ICE program with matriculated undergraduate students was initiated during that semester. Moreover, in an attempt to ensure best practices, a professional development workshop concerning universal design for learning was conducted for UMB faculty with the assistance of UMB’s Institute for Community Inclusion. In addition, an interagency advisory council was formed to provide guidance and feedback.

Initial results suggested that these students learned to advocate for themselves by arranging course accommodations through the UMB disabilities services center. The students also engaged in activities outside of the classroom (for example, pool, gym and track), and three of the students used their identification cards to visit the library housed on UMB’s campus. All of these students had the same access to the academic and social support services as UMB’s general student population. Postsecondary education for students with ID serves as a transition to adult roles and responsibilities.

Conclusion

As is evident from Courtney’s story of postsecondary success and entrance into the workforce, we cannot afford to marginalize any person. Everyone needs to contribute, and school counselors can share their expertise when supporting students with ID in exploring postsecondary options.

Some educators may think that students with ID are being set up to fail if they are encouraged to pursue postsecondary education — particularly inclusive postsecondary options. School counselors, on the other hand, are in position to recognize and celebrate these students’ interests and motivation to obtain postsecondary education just like their peers without disabilities. School counselors understand developmental changes and appreciate that students with ID pass through the same adolescent-to-adulthood transitions as students without disabilities. Consequently, these students need the same stimulation and support.

Through effective postsecondary opportunities, students with ID gain soft skills such as self-advocacy, self-confidence and self-determination that are critical for future employment. Postsecondary options, and particularly inclusive postsecondary educational programs, have resulted in improved outcomes such as better employment opportunities for individuals with ID. School counselors can play an important role in preparing students with ID to be independent adults and ready for college. The role of school counselors needs to be broadened beyond serving just the general student population to one that is inclusive and fulfills the needs of students with ID throughout the postsecondary transition planning process. For more information, refer to the AAIDD website at aaidd.org and the Think College website at thinkcollege.net.

 

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Amy L. Cook is an assistant professor in the Department of Counseling and School Psychology, College of Education and Human Development, at the University of Massachusetts Boston. Contact her at amy.cook@umb.edu.

 

Laura A. Hayden is an assistant professor and school counseling program director in the Department of Counseling and School Psychology, College of Education and Human Development, at the University of Massachusetts Boston. Contact her at laura.hayden@umb.edu.

 

Felicia L. Wilczenski is a professor and interim dean of the College of Education and Human Development at the University of Massachusetts Boston. Contact her at felicia.wilczenski@umb.edu.

 

Letters to the editor: ct@counseling.org