Over the last several years, a lot of focus and attention has been given to the very important topics of transition planning and services into adulthood for those with autism and intellectual disabilities. Supporting families, caregivers and the adolescent/adult child in connecting with adult services in the right way and in the right time frame has been an increasing focus for many families, advocates, and professionals.
Transition planning is not a simple, linear, or one-step process. It can be extremely difficult to assist families and caregivers to think about what will happen to their loved one post age 21. Many families have an understandably hard time facing the difficult reality that school-aged entitlements will end, and the much less predictable and much more spare world of eligibility-based adult services will begin. Knowing where their loved will go and what types of services he/she may be receiving after age 21 is often almost all a family can bear to deal with during the transition planning phase. This process is so difficult and emotionally draining, that thinking far beyond the immediate placement issue can be dauntingly stressful. The paucity of services, the low quality of services, and the wait lists for services are formidable and discouraging. Negative health effects and high levels of stress are common in parents of adults with autism (e.g., Shattuck, 2012; Smith, Greenberg, & Malick, 2012).
One of the elements of the planning that creates such stress is the extent to which it is discrepant from other parenting experiences and concerns. Most of the time, parents focus on establishing their typically developing children as adults, and then give little thought to how they will manage in their 40’s, 50’s, 60’s, 70’s and beyond. In the natural course of the life span, concern for children dissipates as children age. When the child has a disability, this worry and concern does not abate. In fact, it may increase, as parents begin to envision a world in which they personally are no longer able or present to monitor, advocate, plan, and ensure quality care.
At Melmark, we have identified several key considerations in this planning process. While many of these concerns focus on the quality of the placement and the nature of support services needed, we also have identified some common ancillary concerns that are also crucial. Because the transition planning process is so stressful, important topics that need to be discussed with every family that often get overlooked are guardianship and end-of-life planning. Individuals with certain diagnoses such as Down syndrome and other intellectual disabilities or neurological disorders are living longer and fuller lives than ever before. It wasn’t long ago when parents of children with certain disabilities could expect to outlive their child. Now, the need for guardianship is largely established and it is generally put into place. While many families go through the process of obtaining guardianship for their loved one, however, they do not always plan ahead to when they will no longer be able to be that person’s guardian any longer. Additionally, because aging caregivers have not always planned for what will happen when they can no longer make decisions for their loved one, their wishes for their loved one’s end-of-life care can go unknown by others, leaving those decisions in the hands of people who may not know those wishes.
Some families feel that once they have obtained funding and found permanent housing for their loved one, they have solved all of the issues in regard to what will happen to their family member when they are gone. While their family member may have more support in place than individuals without funding or housing, many important decisions in regard to treatment still need to be made, including end-of life planning.
Families can choose to obtain guardianship or power of attorney (POA) of their loved one with special needs. They can also choose to refrain from obtaining guardianship or POA, but remain extremely active participants of their loved one’s treatment team. Explaining and supporting the family’s choice is a key ingredient in family support services. In each of these cases, it is extremely important for families and providers to prepare and have a plan for when families/caregivers/guardians are no longer able to make decisions or be active members of the treatment team.
It is important for provider agencies to initiate, revisit, and support this conversation with families, to not only consider what will happen when the guardian or primary caregiver is no longer here, but what will happen if that person is still here, but no longer able to make decisions for their loved one.
Families do not always consider that there may come a time when the aging caregiver will need their own POA or guardian. For example, if a mother has guardianship of her adult child with a disability, but the mother falls ill and is no longer able to make decisions for her child with a disability, the burden for decision making for both the mother and the child can fall on another family member such as a sibling. If planning for this type of situation has not taken place with the family, it can cause a lot of undue stress on the sibling who is now responsible for making decisions for two family members, especially if the sibling was not an active member of the treatment team for his/her sibling with a disability. This can cause hardship and an interruption in needed services for the sibling with a disability, such as needed medical care, which may require the signature of a guardian even if the person lives with a provider agency full-time.
Provider agencies, like Melmark, can support this discussion and process by making this a part of the regular conversation at treatment team meetings. By educating families about the need to make these types of decisions, and supporting them through the process of trying to make these decisions, added stress and difficulty surrounding the passing or incapacitation of a caregiver can be avoided for both the person receiving services and for other family members. Provider agencies need to support families so that they are prepared to ensure that the care for their loved one goes uninterrupted, and that service agencies are aware of the wishes for their loved one.
End-of-life decisions and planning are not easy subjects to address for anyone, and is something that likely needs more discussion across all populations. This is particularly important, however, for individuals with intellectual disabilities who may be unable to express their own wishes to those who do not know them well.
Family members, caregivers and/or guardians may have very specific wishes for the end-of-life care for their loved one with a disability; however, they may not share those wishes with the providers who are responsible for carrying them out when the time comes. As mentioned before, parents and caregivers may not have planned for their loved one to outlive them, but the odds are that they will.
End-of-life planning, while a very personal decision, can be viewed as a treatment team decision just like everything else. These decisions should include input from the interdisciplinary team (IDT), which includes the individual, family/caregivers, physicians, nurses, case managers, and anyone else that important to the individual. It is important to include the IDT in these decisions so that everyone who plays an important role in the individual’s life is aware of and can support the end-of-life care that is desired. This is a topic that needs to be discussed with every family before these decisions actually need to be made. When this topic does not get discussed, an individual can end up in a situation where someone other than a guardian or caregiver needs to make an important decision regarding ongoing medical treatment. Without the knowledge of the wishes of the family and individual, or a thorough knowledge of that person’s care plan, decisions are made with the best information available to the team at the time. While decisions may be made with the best interests of the individual at heart, they may not align with the wishes of that person. A goal of end of life planning is to avoid facing a situation where a s=decision must be made, the person cannot express their wishes, and no one in the room knows the wishes of the individual and/or their family. This is also a situation that can easily be avoided by planning carefully.
While ongoing guardianship and end-of-life planning decisions are difficult conversations to have, they are extremely important and can prevent more difficulty than they create in the future when important decisions need to be made.
Provider agencies should take the lead in addressing these important topics with individuals and their families, to ensure that service interruptions do not occur as a result of a guardian being unable to make decisions, and to ensure that end-of-life care is carried according to the wishes of the individual and family.
Maggie Haag, LSW, CBIS, is Director of Adult Campus Residential Services, Frank L. Bird, MEd, LABA, BCBA, is Chief Clinical Officer, and Mary Jane Weiss, PhD, BCBA-D, is Executive 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.
Shattuck, P., et al, (2012). Services for adults with autism spectrum disorders. Canadian Journal of Psychiatry, 57, 284-291.
Smith, L. E., Greenberg, J. S., & Malick, M. (2012). Adults with autism: Outcomes, family effects, and the multi-family group psychoeducational model. Current Psychiatry Repertoire, 14, 732-738.