Siblings and family dynamics
The seeds of a sibling relationship are planted early in a family member’s life. Siblings will watch and respond to their parent’s interactions, feelings, supports and to how they include or exclude the brother or sister with disabilities.
Our experience has been that when parents have involved their children at an early age, they naturally recognize that they will be involved in some way and at some point in their sibling’s life. In cases where parents have not involved all their children, or sometimes exclude their children, we find that siblings do not have a tendency to be involved in the future planning. This is simply because they do not know how to be involved differently than before. They may find it challenging to do something that they are unaccustomed to doing—being with or caring for their brother or sister with disabilities.
We suggest that you try to seek opportunities and to nurture the sibling relationship. While this will be different for each family, based on your child’s abilities and the needs of their disability, try to make sure they are engaged and find ways to be part of the family and to have fun together.
Communicate often, and at age-appropriate levels, about your plans and let them express about their plans for the future. Taking time to invest in these conversations will help guide their planning and actions when thinking about the future.
Notes for parents on family talks
Caring for a family member with disabilities is a lifetime commitment that you do not want to force on anyone, yet it is important for your children to understand your intentions.
Are they interested in caring for their sibling with special needs?
If your children might one day be involved in caring for their sibling with special needs, we recommend speaking with each child individually, to gauge their feelings and their willingness to help. This will offer them an opportunity to share ideas with you, rather than you telling them what you are hope will happen.
Although it is a difficult subject, it is important to talk to your children about the time when you will not be around to care for their sibling with special needs. Some children may not want to be involved with the future caregiving responsibilities of their brother or sister with disabilities. Others are more than willing to do so in one capacity or another.
Sometimes, the roles of guardian, trustee, care manager, or social worker are defined by the nature of the relationships among family members. But sometimes, a brother or sister wants to just be a brother or sister, rather than having formal responsibility.
Communicate your vision and expectations.
If your adult children have expressed an interest in helping, it is important to get them involved in the planning process early on. Try to include them in service planning meetings, house meetings, meetings with your financial planner and attorney, social activities, and any other aspects of the life of your child with disabilities. It is perfectly acceptable to have an adult child attend meetings with the financial advisor and attorney. In fact, it is quite advantageous. The more involved everyone is, the more comfortable they become, and service providers will appreciate knowing who to contact in the absence or decline of the parents.
If siblings are not able or willing to be the future caregivers, it is very important to allow them to express their feelings and intentions about their future role. Parents may need to reach out to professionals who have the expertise, time, and abilities to provide for their child’s future care.
These organizations provide assistance to families for these support needs throughout the country. See the websites for PLAN, Inc. (http://nationalplanalliance.org/), HOPE Trust (https://www.hopetrust.com/), and other local support networks.
There are also sibling support groups both for younger and adult siblings. Connect them with other brothers and sisters through SibShops® (https://siblingsupport.org) or the Sibling Leadership Network (SLN) (https://siblingleadership.org/) to find a local chapter or support group.
Helping to get your child established in their own community, with their own support system in place, and creating a life of their own is not only beneficial to them and to you, but to the siblings. Knowing that Ezra had his own life was very important to his sister. But knowing that it would not all be up to her to create this life for him, or change her own life to care for him, was incredibly comforting.
HAVING AN UPDATED LETTER OF INTENT IS CRUCIAL.
The LOI should provide a guide to help you step in when necessary. Make sure they update it periodically when things change, or at least review it annually. Some online resources to check out are the Hope Trust’s Life Plan portal and app, which is designed specifically for families with special needs, or more general resources such as CareTree, Slack or others.
If you also have the ability to access government benefits to be the adult family care provider under Medicaid provisions, you will not be able to be your child’s guardian. Careful consideration should be given when choosing the parent to serve as guardian while the other parent serves as the Medicaid provider.
Sibling Planning Stories
My 44-year-old brother was living at home with my aging parents. Their plan was that he would continue to live in the family house or live with me when my parents died. Until I attended an adult sibling support group, I never knew that there were options available to us.
I became involved as his advocate and served on various boards and committees to learn as much as I could about options. With the information that I learned, I was able to help my parents and my brother move forward in planning for his future today, while my parents are still alive. He is now living in a supported apartment in town, enjoying his independence, while my parents are proudly seeing his abilities soar. We are all in a much better position to anticipate and support his future needs.
In our family tradition, you do not leave home until you are married. My sister Suzanne has Down syndrome. She did not get married, and she still lived at home when my mother was well into her 80s. Suzanne was able to help with the household chores, and her assistance was the primary reason that our mother could still be in her own home. They helped each other.
When my mother died, we had not really talked about Suzanne moving out of the family home and into her own home. The unofficial plan was that she would move in with me and my family in another state. To the surprise of all of us, Suzanne was adamant about not moving out of the family home and away from her friends, her work, and the community that she was familiar with. We had to figure out a way to provide caregivers who would move in with her and help her live the life she wanted. But we never thought to ask her before. I wish we did, so we could have made things easier for all of us.
A siblings' to-do list
As adult children, you should find ways to communicate with your parents before they finalize their financial and estate plans or future plans for your brother or sister. Express the roles you want to be responsible for and those you do not want to be responsible for in your sibling’s life. This is for when your parents age and are no longer able to care for your sibling and when they are no longer here.
If you have been named the trustee of your brother’s or sister’s SNT, ask for help. Make sure you understand the rules and provisions of the trust document. If necessary, consult with an attorney.
Keep in mind that investing for yourself and your personal goals is different than investing for the beneficiary of a trust, especially for a person with special needs. If you are named as both the trustee and the remainder beneficiary, you may be required to substantiate the distributions (or lack of distributions) because of the inherent risk of a conflict of interest. Seek the help of a financial planner to manage the trust assets.
Set up a budget of what your sibling will need. Document the anticipated cash flow needs. Knowing the short-term, intermediate, and long-term needs of the beneficiary will enable you to develop an investment policy that should be followed. Having and following an investment policy for the SNT, will enable you to document that you as the trustee are fulfilling your fiduciary duties. Trusts frequently require that an annual accounting is given to all beneficiaries. It is a good policy to keep all beneficiaries, and/or guardians, informed of the activity of the SNT.
Take care of your own financial and estate plans. What you do and do not do will affect your sibling. Review your beneficiary designations on your retirement accounts, annuities, and life insurance policies to make sure you do not name your sibling directly. If you do not have a will in place, your sibling may receive your assets by the laws of intestate (as next of kin when no will is in place).
Additional articles about siblings
- The Special Needs Planning Guide, How to Prepare for Every Stage of Your Child's Life, Haddad/Nadworny, 2021, with a special thank you to contributing author Leo V. Sarkissian, MASW, LICSW, Executive Director, The Arc of Massachusetts
Affinia Financial Group conducts business under the Special Needs Financial Planning name. Advisory services offered through Affinia Financial Group, LLC, a registered investment advisor.
Content in this material is for general information only and not intended to provide specific advice or recommendations for any individual, nor intended to be a substitute for specific individualized tax or legal advice. We suggest that you discuss your specific situation with a qualified tax or legal advisor. There is no assurance that the techniques and strategies discussed are suitable for all individuals or will yield positive outcomes.
The experiences described here may not be representative of any future experience of our clients, nor considered a recommendation of the advisor's services or abilities or indicate a favorable client experience. Individual results will vary.