“Families caring for children, siblings or other family members with significant special needs and developmental disabilities have learned one of life’s great truths: these individuals enrich, enhance and add deep joy and meaning to the lives of everyone they touch. Far from being a burden, these family members hold a unique role within the family, drawing out the best, kindest and most loving character traits of each family member and providing a consistent, strong and bright thread to the very fabric of the family tapestry. These individuals, in spite of their frequent inability to communicate in traditional ways, do, in fact, communicate at the very heart-and-soul level and they are not only cherished but truly known by the loved ones who provide their day-to-day care.
Thus, when our beloved family members, such as Abby Sandler’s sister Aimee, or our own sons Adam, Dylan and Wayne, become ill or approach the time of their death, it is essential that family members have the ability to come together, with the medical, social work and other professionals in their lives to make wise, well-informed and compassionate decisions for their care. It is when the caring family and the team of professionals are able to pool their collective expertise that the best decisions can be made. Families facing these decisions are often exhausted, under severe stress and immeasurably sad as they face the impending loss of one they hold so dear. During this highly vulnerable time, they may forget to ask critical questions, or become intimidated by the seeming authority of the professionals surrounding them. It is precisely for these times that a document such as Aimee’s Bulletin is needed. It provides clear guidance for both the family and the helping professionals to navigate safely through these storms and ensure that the individual with special needs has a voice and is treated with care, dignity and respect while reducing the stress on the family. It is my hope that through public awareness, training and education, this Bulletin and its underlying goals, principles and purpose will be made known to every family who may one day need it and to every medical, social work and legal professional who may one day be called upon to assist a family through this life passage.”