The Most Challenging Special Need - Mental Illness
"My daughter/son is brilliant - why can't she/he make better decisions?"
With over 30 years of nursing and special needs case management experience, I have come to anticipate this statement from parents of adult children with mental illness.
It is not uncommon that National Care Advisors will receive a referral to work with a family that has an adult child that is not self-supporting, but has no diagnosis. Or in some situations, the adult child has a diagnosis - but treatment has been unsuccessful.
In all cases, the parents report spending significant amounts of money, time and energy trying to find solutions for their loved one - and yet they still have not achieved their goals for quality of life.
All families touched by a loved one with mental illness know the reality that the illness impacts the quality of life of ALL family members.
National Care Advisors is dedicated to assisting clients to find solutions and to plan for a future that provides for the best possible quality of life for ALL family members, not just the individual with the special need.
As an example, an elderly mother reached out for assistance in transitioning her son to live independent of her home. The son was in his 50s, the mother was in her 70s. The son had been diagnosed with a mental illness at age 21, while in college. There were two siblings, neither lived nearby and they were not involved in the care of their brother.
The son has never been able to sustain employment and has been supported by his parents throughout his adult life. He has had mental illness crises from time to time, requiring hospitalization. His mother has provided all care and supervision for medical decisions, medication management/administration, financial management, socialization, housing as well as a vehicle for her son to drive when he is having "good days".
Our first step was listening to the mother and understanding her short and long-term goals for the transition and planning for her son. We recommended that the son be involved in the discussions as much as he was able. We also recommended the siblings also be included in discussions, especially as it related to any successor role they might play for their brother.
We identified options for housing, supportive care and financial management in the community defined by the mother and son. The associated costs were researched. The son's benefits were analyzed and additional case management advocacy was provided to maximize those benefits. In consultation with the mother and her financial planner, a determination was made for the best option that was within the scope of available resources and also considered the cost for quality end-of-life care for the mother. A plan was established that identified the recurring monthly costs as well as the large purchase costs that were likely to occur over lifetime. The mother then consulted with her attorney to make sure that her legal documents supported the plan - including the establishment and future funding of a third-party special needs trust and consideration for her other children, as well as her own eldercare needs. The son signed power of attorney documents and fiduciary services were engaged to assist him with his day-to-day financial management.
Concurrent with the quality of life planning process, the transition plan was also occurring. This plan involved making sure that the son was established with quality mental health professionals to support him and his mother through this major change in his life. Patience and time was needed to assist the son to accept supportive care and supervision from paid caregivers rather than his mother. Supporting the mother to "let go" was also a key part of the plan. The priority was making this move in a safe and organized manner, anticipating challenges, and addressing problems as they arose timely and effectively.
It took a full year from the point of the initial call to National Care Advisors, to achieving the transition for the son to live independent of his mother's home. The NCA case manager engaged in supporting the son and his mother through this process continues to manage challenges as they arise.
Transitions in life are inevitable. They can either be done without planning, at times of crisis such as when a parent passes away or becomes incapacitated or they can be done in a safe, well-supported process that minimizes the stress of change as much as possible.
At this point in psychiatric medicine, it is clear we have more questions than answers. We know that the funding for research and for support services for individuals with mental illness challenges has never been adequately addressed in this country or any other. In the United States, public benefits and support programs for individuals with Developmental Disability and Autism far exceed those available to individuals with mental illness diagnoses. The functional disability for activities of daily living and the need for quality-of-life services are often identical, but the program funding is vastly different.
National Care Advisors is committed to assisting clients to find the BEST possible solutions to care and quality of life within the scope of all available resources. We have the expertise to assist families to navigate through the challenges and reality of caring for a loved one with mental illness. If you have a client or loved one struggling with mental health challenges, contact us, and let’s discuss how we can assist them today.