The majority of people with a developmental disorder (DD) function in the range of mild cognitive impairment (Friedlander et al. 2003; Waldman et al. 2006) and can be accommodated in a general practice with a little extra training, understanding, and effort. Treating patients with developmental disabilities in the dental office does not require a whole new set of skills but rather an adaptation of the ones already possessed by the provider (National Institute of Dental and Craniofacial Research 2009).
Ideally the initial patient interview/collection of personal information should be done over the phone prior to the first visit, but it could also be accomplished at the first appointment in a quiet and private space away from the distractions of a busy office. A “quiet room” if available may give the patient a chance to sit in the dental chair and become accustomed to the surroundings in a nonthreatening manner. You may also consider having only a single person, or perhaps two, be present during the interview to decrease the level of stimulation and allow the patient to become familiar with the provider and assistant.
The majority of minor children with DD reside with their families and will most likely present with a parent as a primary caregiver. In that case collecting personal information such as address, phone number, parents’ names, and emergency contact information should be routine. In addition, it is important to collect the contact information of the pediatrician (or primary care physician) as well as any specialists involved in the patient’s care. You may also wish to collect other data that may be useful and relevant, such as where the patient attends school, type of class, and other therapies the patient may be receiving (i.e., occupational, physical, or speech therapy). Since you may wish at some point to contact other professionals involved in the patient’s care, it is prudent to get the parent’s permission to do so from the start.
While some adults with DD may live independently in the community, many reside with their families or in a community residence. For patients who reside on their own and are their own guardians, collecting the necessary information may take a bit more effort. It is important to remember that individuals with an intellectual disability will show deficits not only in cognitive functioning but also in adaptive functioning as well (National Institute of Dental and Craniofacial Research 2009).
Adaptive skills are functional life skills such as communication, self-care, and social interpersonal skills. Therefore, the practitioner should be prepared to assist the patient if necessary. The patient may have a social worker, case worker, friend, or family member who helps him or her with health care logistics/access and decisions. It is critical to identify if such a party exists as this person may be of great help in facilitating treatment. It is also key to be sure to obtain the patient’s permission to share information with the third party in order not to violate any Health Insurance Portability and Accountability Act (HIPAA) regulations.
Other adult patients may reside in a community-based group residence and in this situation the dental practitioner may have little or no contact with a patient’s family members (Romer & Filanova 2006). While this may appear problematic at first, in reality this may be one of the more easily navigated scenarios. Patients who live in such a setting usually will be accompanied by a direct care staff member (caregiver) who will have all the essential information in a binder or a “big book” that contains guardian information and records of past medical and dental visits, as well as behavioral and social information (Romer & Filanova 2006). The agency that runs the residence usually requires a consult form be filled out that documents the dental visit. A written request on this form is also a good way to obtain any other necessary information.
Of course, adults with DD may also live at home with their families. In this case, a parent or other family member will most likely be the resource for your basic information. It is important to note that even if an adult with DD lives with a parent, that parent may not be the legal guardian and may not be able to consent to treatment. It is imperative that a practitioner be familiar with the guardianship laws in the state in which he or she practices, as they vary quite a bit (Romer 2009).
Parents of children with disabilites report more stress than those of typically developing children (Boyd 2002). Such parents also report a feeling that providers do not actively listen to their concerns and may not respond in a supportive manner (Minnes & Steiner 2009). While it is always important to build a strong patient-provider bond, it is critical in this population. There are several issues that one needs to consider that are unique to this situation. These parents have suffered a loss of typical child ideation; that is, while they love the child with a disability, it is not what they expected. There is a wonderful poem by Emily Perl Kingsley, mother of a child with a developmental disability, entitled “Welcome to Holland.” It likens the experience of having a child with a disability to planning a trip to Italy and ending up in Holland. There is loss and disappointment but also beauty and joy. Understanding that a parent may be overwhelmed with responsibilities such as other children, a spouse, a job, running a household, doctor/therapy appointments, and financial crises will help foster a bond. As a provider, you only have limited contact with this patient. A parent has that responsibility and stress 24 hours a day. Having a child who may have abberant behaviors and/or look different from other children can result in parents feeling isolated from other “typical” families. Other kinds of social isolation might include inability to attend church, work, or even go to a restaurant. These types of social and community interactions that we take for granted may not be a part of your patient’s life. It is important to recognize that parents who have experienced this may be initially wary in any new setting, fearing rejection or discrimination. Also, it does not mitigate these issues just because that parent’s child is now an adult. In fact, these feelings may be exacerbated by loss of other typical milestones such as a child going off to college, getting married, and having children of his or her own. (N.B. This is not to imply that these things are not possible for people with DD, but rather that the patients discussed here are adults who still require the supervision and caregiving of a parent and are less likely to achieve these milestones.) Setting the stage for a successful first visit is of paramount importance!
During the interview it is key to discuss who the primary caregiver is. It may be a parent, grandparent, sibling, other relative, or professional home health care assistant. Understanding who the patient lives with and who the primary caregiver is will give a better overview of the family dynamic.
This is also true for patients who reside in community-based residences. Important questions include: Who is the primary caregiver? Does this patient work better with a particular staff member? Have the residents of the home been together a long time? Does the patient have a roommate, someone he or she is close to? What are the “family” dynamics of the residence? How does the patient fit in with/get along with his or her housemates and staff?
Another aspect of patients’ personal situations you may wish to delve into is about hobbies or things he/she like to do. What is their typical day like? What kinds of activities do he/she enjoy? Many practitioners use patients’ interests to foster a bond, whether it is a favorite sport, hobby, television show, or other interest. Our patients with developmental disabilites are no different. Patients love to talk about themselves and share, so ask the patient or the caregiver what kinds of activities the patient enjoys and what thing/>