Those of us with family members with special needs often wonder who will be there to help them when we cannot.
Building a Support Team
All too many parents assume that another family member will step up, without considering that family member’s inevitably changing circumstances and needs – or, sometimes, even without discussing the prospective role with that family member. Parents and spouses also tend to underestimate how much is required, how much they do and how hard it would be to replace them. It may not take a village, but it definitely takes a team. Thanks to a grant received by Texas Parent2Parent, we can start creating that team now, letting team members develop connections and processes and documenting what they need to know and do.
A process can always be changed, and probably will be. But starting with the known routine and documenting the details can give the people who help now and the people who take over later a good place to start.
Crafting a care plan
Whoever your people and whatever your process, document, document, document. Do not try to cut corners with a formulaic special needs trust as though there were no need to consider the nature and quality of care, choices, finances and the future. If we do not plan for these, our documents may paper over or, worse yet, create as many problems as they solve. If you are using a master pooled trust, an agreement is provided. This does not eliminate the need for passing on, in writing, what you and no one else knows about the person with special needs: their routines and aspirations, their likes and dislikes, what upsets them and what soothes them, what you have found helpful and what you would not try again together with medical records, medical history, prescriptions, allergies, Social Security and other documents.
So many things may happen.
Means-tested benefits may be cut back.
People receiving means-tested public benefits may inadvertently lose them through work, inheritance, marriage, or simply forgetting to promptly report a change of address.
Creating a resilient network
Self-reliance, that very American aspiration, is best complemented by interdependence and by dependence on a network of friends, family, neighbors, colleagues and others. That is how we all get through life.
In everyone’s life there is a changing cast of characters. Inviting more people in can both enrich it and increase the likelihood that when help is needed, someone will be there who knows what to do or who to call.
Gathering people in a group, a team, enhances care and commitment as people get to know one another, come to understand how their part of the puzzle interacts with those of others, and become accountable to one another as well as to the person who is their focus. In subtle ways, people become mutually indebted to one another. As we see in our professional associations, this strengthens both the individual and the group.
For more ideas, see Al Etmanski, Safe and Secure: Seven Steps on the Path to a Good Life for People with Disabilities: Vancouver, B.C.: Planned Lifetime Advocacy Network, First RDSP Edition, PLAN of Vancouver
Elder law attorney, Terry Garrett, CELA, is a member of the National Academy of Elder Law Attorneys and is an Approved Guardianship Attorney. She assists people in elder law, estate and special needs planning, guardianship and settling estates. She graduated with honors from Cornell University. She was on the Dean’s List at Wharton Business School. She earned her J.D. at Columbia Law School, receiving the Parker Award and a Mellon Fellowship.