We autism grandparents are often the persons who give more thought to our grandchildren’s long-term futures than do anyone else, including their parents. We’ve lived longer and have a first-hand appreciation for the value of a long-term view and the importance of planning for the long term. We are the ones who continually say to ourselves, “I wish I’d done thus-and-so when I was young,” or, “I wish I’d known to do thus-and-so when I was young.” And our grandchildren’s parents are often so busy coping with today’s challenges that they just don’t have the time or energy to do a lot of thinking and planning about the long term.
We autism grandparents can be helpful to our grandchildren’s families by offering to not only give serious thought to our grandchild’s future, but to also offer to take the lead in putting together a “Life Plan” for our grandchild.
But there is a significant caveat: this takes a lot of time, a lot of research, and a lot of thinking.
As an autism grandparent myself, I need to understand and accept – and get my granddaughter’s parents to understand and accept – that my granddaughter may well outlive all of us. There may come a day when she has no living members of her immediate family. What can be done now to help ensure that when that happens she will continue to have a good quality of life?
And, as the year 2020 has confirmed, no matter how many safeguards and assurances are put in place, nobody can plan for the unexpected – such as a global pandemic. What can we do now to ensure quality of life even if there is an unanticipated crisis?
My granddaughter’s Life Plan should contain the following thirteen components – and each one documented in a Life Plan Notebook.
1: MONEY
What are the sources and amounts of money that are needed to support my granddaughter for her entire life? Should there be a Special Needs Trust? An ABLE (Achieving a Better Life Experience) account? Will she have the ability to earn money? A professional financial planner can help with all of this.
2: LEGAL CONCERNS
Who are the legal guardians for my granddaughter? What about when/if they are no longer available? Should there be someone appointed as power of attorney, and when might this happen? A special needs attorney can be helpful.
3: PUBLIC BENEFITS
What are the current and future sources of state and federal support and benefits for my granddaughter? When are the appropriate times to apply? How do you keep up with the various changes that continually happen with public support? Local social service agencies can be helpful.
4: DECISION-MAKING
When my granddaughter reaches adulthood, will she be legally capable of making her own decisions? If not, will she have a legal guardian who can make good decisions? If she IS capable, should there be a person or group of persons who are willing to help her with her decisions?
5: HEALTH
(This topic is often broad and deep.) What are the details of my granddaughter’s current physical and mental health, including various therapies? What physical/mental health concerns can be reasonably expected for the future? What parts of her health history are important to document? Who are the professionals who currently treat her health concerns, and what is the plan for transitioning to other professionals as needed in the future?
6: ABILITIES/CHALLENGES
What are my granddaughter’s current abilities and what are her significant challenges? What are the reasonable expectations for the future? How is she currently dealing with (getting therapy, etc.) challenges, and what is the plan for the future?
7: DAILY ROUTINE
What is my granddaughter’s current school/daycare/activity situation and what are the plans for the future – including when she is no longer eligible for public-supported school? Is she a candidate for post-secondary education, and if so, what is the plan? Is she a candidate for getting a job, and if so, what is the plan?
8: GOALS
What are the top few significant goals for my granddaughter? And what are the steps towards reaching those goals? (For example, one goal might be developing some close lifelong friends. Another might be achieving the ability to do well with transitions – ranging from seemingly small transitions such as getting into a car to huge transitions such as moving to a new household.)
9: TRANSITIONS
What will be my granddaughter’s significant transitions? (Adolescence, changing schools, ending school, changing homes, death of family members, illnesses, etc.) And how can her family/friends continually help her prepare for them and make them as easy as possible?
10: LIVING ARRANGEMENTS
Where will my granddaughter live during the different phases of her life? (With her parents, independently or in a group home, in an assisted-living facility, etc.) Are there ways to plan and prepare?
11: SOCIALIZATION/INTERESTS
What are things that my granddaughter enjoys doing with others? Are there additional social activities that she might enjoy, and what can be done to initiate those involvements? Are there things that interest her when she is by herself? Are there additional things that might interest her? What can be done to nurture activities and interests so they can become lifetime enjoyments?
12: LOVE OF FRIENDS/FAMILY
What can be done to assure that my granddaughter is always – throughout her life – surrounded by persons who sincerely care about her? Is there an opportunity to nurture special friendships with much younger relatives who are not in her immediate family? Are there long-enduring groups or organizations – such as faith-based organizations – that can provide her with a sense of family? And if so, when and how should that involvement begin and be continually nurtured?
13: THE “VILLAGE”
Who are persons who might be willing to be members of my granddaughter’s “Life Team”? (Life Team members are willing to receive updates about her, willing to be called on for special favors and advice and support, and willing to confirm that my granddaughter is, in addition to members of their own immediate family, someone whom they care about and want to always be helpful.)
There are additional thoughts about the process of developing a Life Plan for my grandchild. First, she should be involved, as much as possible, in developing and continually modifying the Plan. That might mean asking her opinion about various aspects, and/or simply explaining things as they develop. Second, her Life Plan will be subject to ongoing modification as needed, and a total review at least every year or two. Third, the maxim, “Hope for the best, but plan for the worst,” should be in mind with every aspect of the plan.
And finally, whenever we get a chance, we should seek advice from persons who have aging adult special needs children and ask for their thoughts on what components and strategies can be helpful for our Life Plan.
We autism grandparents know first-hand that life is filled with challenges and changes and is impossible to predict. We can be very helpful to our grandchildren’s parents by offering to help develop an appropriate Life Plan. And, as always when we offer help and suggestions to our grandchildren’s parents, we need to do so with the clear message that THEY, not we, know what’s best regarding their children, and that we’re simply willing/able to provide whatever support and assistance that they’d like to have.
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