The history of treatment of individuals with developmental disabilities is fraught with violations of personal liberties. In a seminal article, Bannerman, Sherman, and Sheldon outlined the need to respect individual rights in the context of effective treatment (1988). Since that time, service providers have struggled to balance these liberties with the need to habilitate. While we have focused extensively on how to build skills and create meaningful experiences for those we serve, we continue to refine ways to uphold personal choice in the context of service provision. Humane treatment was not universally available until recently, and many safeguards now exist to ensure that the rights of individuals with developmental disabilities are respected, that they are afforded personal liberty, and that they are provided with maximal choices in their care and goals.
Mary Jane Weiss, PhD, BCBA-D
Allan Forster
Maggie Haag, LSW
The rights of adults with disabilities are universally acknowledged and are considered in treatment planning more now than ever before. When making decisions on behalf of a person that is unable or unwilling to make decisions for himself, safeguards are put in place to protect that person’s rights. For example, many states have taken on a person-centered planning model in which all services and supports designed for an adult with disabilities is centered around the individual’s needs, wants, interests and preferences. For an individual who is unable to communicate these aspects of his life, this usually takes place on the context of an interdisciplinary team (IDT) which includes important people in that person’s life such as parents/guardians/family members, healthcare providers, clinicians, case managers, and direct support workers. However, even with all of these processes in place, adults with disabilities are still at risk of having their rights violated, even by the most well-intended members of their IDTs. Carefully creating supports and ensuring safeguards to assure the protection of the individual’s rights is essential to treatment planning.
Rights violations do not always come in the form of an egregious act. They can often be subtler, and they are often the unintended consequences of making choices for someone without really considering what that person wants. For example, consider a person’s dietary needs and recommendations. How many of us go to the doctor only to hear that we “need to start eating healthier” or “need to get more exercise.” What happens when these recommendations are made for an adult with a disability? Often, someone else comes in, perhaps a dietician, and informs the IDT of what this person can and cannot eat. The IDT then makes plans and arrangements to ensure the person is not eating anything not on the “approved foods list.” How often is the person who is being impacted by these decisions asked for his opinion? How often are IDTs really trying to determine what foods on that new approved foods list are foods that the person really likes? Do teams ensure that the individual is not routinely then given non-preferred foods? This may seem like a very simplistic example, but taking the right to decide what a person will eat away from him or her is truly a rights violation. Typically, treatment teams involved in these choices do not intend to exert undue control over all aspects of a person’s life. Such events occur because service providers are ultimately held accountable for the health and safety issues of the individuals they serve. A failure to respond to dietary recommendations when a person is diagnosed as pre-diabetic can be neglectful on the part of the service provider. So how do providers ensure they are balancing a person’s personal preferences while also ensuring the health and safety of that individual?
Understanding how to incorporate a person’s preferences into all services he or she is receiving is critical. Service providers must work hard to identify ways to involve individuals of all functioning levels in making choices throughout his or her day. Whether this choice is about what leisure activity to engage in or what food to choose for dinner, having choices increases a person’s happiness and quality of life. Furthermore, choice is an entitlement to all persons, regardless of disability status. Removing choices puts control in the hands of others, which most adults with or without disabilities would not prefer.
Ensuring Person-Centered Planning
Person-centered planning is an ongoing process that helps an individual, their loved ones and treatment team determine the best plan of action for supporting that person. Simply having an interdisciplinary team does not constitute person-centered planning. If the IDT comes to the meeting with a list of goals the individual will work on, without having received input from the individual and family, then person-centered planning has not occurred. While this process will not look identical for every individual since functioning levels and needs differ, there are several questions providers can ask themselves when helping individuals makes choices:
- Have we provided education to the individual/guardians about why this intervention needs to be made, in order to support and informed choice?
- Have we offered the necessary supports to assist the individual in choice making?
- Have we identified the preferences of the individual surrounding this issue?
- Are we continuously assessing the preferences of the individual surrounding this issue?
- Have we built-in systems that identify and support changes in a person’s decisions/preferences?
- Is there an absence of coercion in the decisions made?
Ensuring that all of the supports necessary have been provided to promote participation and providing opportunities for optimal choice making are crucial for person-centered planning. Additionally, keeping an open-mind from a service provider perspective and working to understand cultural and personal differences is also critical. The below case study outlines the process taken for individual in balancing the person’s rights with his health and safety needs.
Case Study
John is a 54-year-old man who has been in residential placement since the age of five. He has intellectual disabilities and is non-ambulatory, but he is able to drive his motorized wheelchair. John is verbal but can be difficult to understand with people who do not know him well. John is able to tell people what he wants and make choices, but there are many things he is not able to get for himself due to physical and cognitive limitations.
John has a very involved family who come to visit him weekly, and speak to him on the phone regularly. One of his family members is his legal guardian, and participates in all treatment team decisions made for John. This relationship is very important to John and he takes his family member’s opinions very seriously, and it will often sway his own opinion. John’s family members will often bring him his favorite foods when they come to visit, and these foods are often unhealthy and usually include a variety of junk foods.
John’s family has a history of obesity, and John is also obese. Since John is non-ambulatory, he is at a higher risk for skin breakdown and has a history of skin breakdown. John also does not like to shower or get repositioned in his wheelchair or bed, which in turn can cause skin issues to take much longer to heal. Both John’s weight and skin integrity issues pose serious health risks to John, so the IDT wanted to develop a behavior plan that can help address both of these issues.
The first component that occurred prior to any treatment plan development was education. A team meeting was held with John and his family to discuss the health issues John is facing, as well as the consequences of not addressing these issues. Ensuring John and his family members had the information necessary to understand why a change may need to occur helped the treatment team explain their ideas in a much more open-minded forum. This helped the family accept that they should consider bringing healthier food options when coming to visit John for their weekly visits. Since the whole family has issues with weight, education about healthier alternatives was also provided, as they admitted they themselves did not know how to eat healthier and expressed an openness to the information.
The next component of the planning process was ensuring that John’s preferences were all accounted for and could be incorporated into John’s plan. This also included ensuring that John still had the opportunity to make choices within his plan, even if the choices he was making were not always the ones the treatment team preferred. Since John had a heavy preference for unhealthy food items, the team had to develop strategies that would encourage him to make healthier choices without forcing them on him. Additionally, since John did not like showering, the team had to identify ways to motivate John to shower.
It had been identified early on that John was very motivated by attention and participating in activities, as well as motivated by people telling him what a great job he was doing. The team developed a healthy alternative menu for John with his input, and as part of his meal planning he gets to go to the grocery store to buy the ingredients for his lunches as well as help to prepare his lunches each night for the next day. He has a variety of meal items to choose from, and he decides which meal he will go grocery shopping for. John loves being able to participate in his meal prep, and also loves telling everyone he sees the next day about the lunch he prepared. Staff has been trained to give him a lot of attention and praise when he talks to them about his healthy eating, and encourage him to keep up the good work.
For his hygiene routine, John keeps a self-monitoring chart where he marks down each night that he showers. John loves to show off his chart and his clean appearance to the staff, and every time he shows his chart and he has showered, the staff provides a lot of attention and praise for engaging in that activity and they encourage him to keep up the good work. He is now seeking attention for his hard work, and he seems genuinely pleased by his ability to report on his success.
Since the implementation of this plan, John has been more involved in making choices about his meals, more involved in his hygiene routine, and more cooperative with both. Another important component of this plan is that even though John has access to the healthier foods and choices, he is still allowed to make a different choice if he wants to. The whole idea of the plan is that John will be more motivated to make the better choices because he will get more access to other things he enjoys as a natural consequence, such as more praise and attention, as well as getting to go out to the store more often, which is also preferred. By incorporating choices and preferences into the plan, as well as by having provided education, John has been the driving force behind the plan components and success. John has shown true progress in some ancillary and important ways, including reduced skin issues and reduced weight. While changes may need to be made in the future if he does not make progress with his health, these changes will be made with his input.
This case illustrates some of the components of person-centered planning, and provides a real life example of how habilitation goals can be balanced with respecting individual rights. Managing these issues with adults with developmental disabilities is a complex process, and requires clinical skills, compassion, commitment to effective treatment, and respect for individual dignity and choice. Treatment teams need to become more adept at assessing the need to examine issues of choice and personal liberty. In addition, the human service fields need to share more strategies for respecting these issues and finding creative solutions that support effective treatment and preserve individual rights.
Maggie Haag, LSW, is Senior Director of Adult Services, Allan Forster is Director of Residential Services, and Mary Jane Weiss, PhD, BCBA-D, is Senior Director of Research, at Melmark.
The mission of Melmark is to serve children, adults and their families affected by a broad range of intellectual disabilities. With service divisions in Berwyn, Pennsylvania, and Andover, Massachusetts, Melmark provides evidence-based educational, vocational, clinical, residential, healthcare and rehabilitative services, personally designed for each individual in a safe environment of warmth, care and respect. For more information, please visit www.melmark.org and www.melmarkne.org.
References
Bannerman, D., Sherman, J, Sheldon, J., & Harchik. A. (1990) Balancing the right to habilitation with the right to personal liberties: The rights of people with developmental disabilities to eat too many donuts and take a nap. Journal of Applied Behavior Analysis, 23, 79-89.
