Updated: Sep 5
Guardianship is one of those essential topics families with Down syndrome should not avoid. You do have options but if you do nothing, you are, in essence, making a choice ...a risky choice.
Why is Guardianship Such an Important Topic?
When any of your children, including your loved one with Down syndrome, reach the legal age of majority (typically 18), they become adults with full authority to make decisions for themselves in the eyes of the law.
These unlimited powers include health, financial, legal, housing, and marital decisions as long as they don't violate any laws. To be clear, this means your now adult with Down syndrome has the authority to make decisions regarding their routine and emergency health care, their financial benefits, legal documents, relationships, and much more.
Furthermore, since they have this sole authority, you do not have the authority to make any of those decisions on their behalf or even be involved in the discussions unless they so choose.
Finally, if others such as doctors, teachers, or social workers deem that your self-advocate does not have the capacity to make such complex decisions, they won't consult with you since you have no legal standing. They may request support for your self-advocate through the courts.
That's a pretty abrupt transition for any of our kids and all parents. It's downright scary.
If you have not made a decision at age 18, you may still consider your options now. Your family does have alternatives.
Guardianship: someone, typically a parent or sibling, goes to court to seek guardianship. If granted, the guardian holds the authority to make all decisions such as health, financial, legal, and housing. The self-advocate no longer maintains that authority. Since guardianship is a legal order, it takes some time and legal fees (although in most cases you may do it yourself if you are so inclined).
Power of Attorney (POA): many people put in place POAs to make decisions for us if we are incapacitated. For example, if we have a health crisis and can't make medical or legal decisions, a POA allows someone else to step in and make specific decisions on our behalf as provided for in the POA. Family can put a POA in place for specific circumstances for your self-advocate if you wish. These are typically not broad or all-encompassing but apply to specific circumstances.
Supported Decision Making (SDM): SDMs are rather new and currently only provided for in about a dozen US states (currently at least AK, CO, DC, DE, IL, IN, ND, NV, NY, RI, TX, VA, WA, WI) as well as Canada, UK, Sweden, and perhaps others. With an SDM, your self-advocate maintains full decision-making powers over their life but can designate specific people (parents, siblings, other family, doctors, lawyers, etc) as they wish to provide support for specific decisions. Hence, specific people are designated for specific types of decisions (medical, financial, legal, housing, relationships, etc). When designated, that "supporter" can provide guidance and opinion on that topic. However, this is not a legal document and the self-advocate does not have to accept any of the guidance. Ultimately, the decision resides with the self-advocate.
Cost & Process for Each Option
Guardianship: Since guardianship is a legal order, it takes some time and legal fees (although in most cases you may do it yourself if you are brave and so inclined). The process typically includes some court visits with the family and a rather simple annual renewal process. Successive guardianship (after the initial guardian passes or is unable to perform duties) should be provided in the guardian's Will. If the guardian changes or the self-advocate moves city or state, guardianship will have to be transferred through a court hearing.
Power of Attorney: This is a legal document that requires some time and expense to complete. It can be done with little cost and may need to be updated if the "supporters" or circumstances change.
Supported Decision Making: This is not a legal document. Anyone can write this up in a Word document. However, as stated above, it therefore is not legally binding and self-advocates may choose to ignore any support at any time.
The Self-Determination Debate
Guardianship is often a contentious topic these days. Today's society, more than ever, supports every person's uniqueness and interest to make decisions that affect their lives. Hence, many people, including some probate judges who reside over guardianship cases, are beginning to support SDM over guardianship which removes that authority for self-determination. Their view is that no one else should be able to speak for other people and make critical life decisions for others. Certainly, the applicability of SDM varies within the I/DD community, but in my opinion less so within the Down syndrome community.
However, I contend that the SDM-approach introduces significant, unwanted, and unnecessary risks for the self-advocate. SDM requires the self-advocate to make decisions impacting their life such as medical, financial, and housing decisions. Yes, they may gain input from others but ultimately the self-advocate must decide. This is a heavy burden and can result in a time-consuming process and in some very bad decisions. We love our daughter dearly and are so proud of her independence and growth, but honestly, she does not have the capacity to make medical treatment decisions. Nor does she have the ability to understand the very complex world of financial benefits for people with intellectual disabilities and the countless hazards that can result in lost benefits for a lifetime. Though SDM designates supporters, it does not require that input be sought or considered. Ultimately, the decision is the self-advocates alone.
It's Not One or the Other
Proponents of SDM suggest that guardianship strips all rights from your self-advocate. Technically and legally, that is true. However, that certainly doesn't have to be the case in practice. We have always endeavored to involve our daughter, Gwendolyn, in any decisions regarding her life. We want doctors and teachers to talk to her, we want them to explain their questions and choices and we help clarify when necessary. We ask for her thoughts and preferences regarding schools, work, housing, and more. She is part of all decisions though we do retain the right to override if necessary. It rarely is unless it involves complex topics like financial benefits, ABLE accounts, and Special Needs Trusts which she understandably struggles to grasp.
With guardianship, that hasn't changed. She is at the center of decisions which impact her and will continue to do so. We've provided for that through the identification of successive guardians after our passing and have documented our (Gwendolyn's and parents') wishes and expectations through a Letter of Intent. And we have protected Gwendolyn's future by ensuring caring support, a guarantee SDM cannot provide.
How to Structure a Solid Guardianship Agreement
Ensure you have discussions with your loved one about what guardianship means and that their continued involvement in all decisions is paramount. You can designate parents as co-guardians but anyone else (siblings, other relatives, etc) can only be sole guardians. Ensure you provide for successive guardians that take effect upon your passing or inability to serve as guardian. Be sure you discuss this succession with your loved one and with successive guardians in advance. Court representatives will visit with you and your self-advocate before proceeding to ensure guardianship is in their best interest and that you are prepared to assume these duties. This is a legal document so it does require filing court documents and appearing in court. You typically can do this without a lawyer but it will be easier with one. Typically, when guardianship is assumed, beyond transferring ultimate legal decision-making authority to the guardians, the self-advocate loses voting rights. You can seek to maintain such rights for your self-advocate. This will require another court form and concurrence by your self-advocate's doctor.
Guardians vs. Caregiver
Since we are talking about guardianship, I want to clarify the important differences between guardians and caregivers. A guardian has ultimate decision-making authority for your self-advocate over items like medical, financial, legal, and housing as I've described above. In my opinion, adults with Down syndrome should have a designated guardian from 18 on. A caregiver is someone who helps take care of them. Caregivers may remind them and/or distribute meds, provide learning, social, and vocational opportunities (through day programs and work), provide transportation, help arrange housing, monitor and assist with healthy choices like menus and assist with hygiene care. The level of caregiving necessary can vary widely amongst people with Down syndrome based on age, environment, and cognitive ability. Typically, parents are the primary caregivers during childhood and adolescence although other relatives, teachers, and friends certainly often play a role in these areas.
However, as you and your self-advocate age, this will eventually have to change. When parents are unable to care for their loved ones or when the family decides moving out of the family home provides needed growth for the self-advocate, then the decisions regarding caregiving must be addressed. Perhaps they are quite independent and need little assistance. Maybe they just need reminders and oversight, but in either case, caregivers are warranted. Caregivers typically either live with the self-advocate (either family in a family home or staff at a residential community or group home) or visit often (in the case of self-advocates living in their own apartment). For Gwendolyn, she moved into an independent living community about two years ago. The staff there have assumed the caregiving role although we do provide some further oversight since we live nearby.
We have been very clear with Gwendolyn's future guardians, which in our case are her siblings, that guardianship does not equal caregiving. We do not expect or desire Gwendolyn's siblings to be her caregivers. We expect Gwendolyn will continue to live in a residential community commensurate with her level of independence and that community will provide caregiving. Gwendolyn's siblings will eventually assume guardianship but not the caregiver role beyond any loving oversight as her siblings. This has been preserved through discussions and in our Letter of Intent for Gwendolyn. You should consider these roles for your family and have discussions with everyone involved.
Before age 18, consider your guardianship, POA, SDM options.
Involve your self-advocate and other members of their Independence Team in these discussions.
Document your family's choices through your Letter of Intent (LOI). Grab your free LOI template when you subscribe to our website here.
Secure guardianship (or POA or SDM) with proper filings and documentation before age 18.
Continue to practice PCP (Person Centered Planning) with your self-advocate's involvement.
Consider the long-term caregiver role for your self-advocate, especially when considering life beyond the family home.
You can learn more about these legal documents, guardianship, financial benefits, and more in the award-winning The Essential Guide for Families with Down Syndrome: Plans and Actions for Independence at Every Stage of Life. Learn more here.
Also, check out our YouTube Series on independence, including our episode on Legal Protection here.
I'm thrilled to announce The Essential Guide was honored with the Gold Award by the Nonfiction Authors Association!
The Essential Guide provides step-by-step support to:
Inspire mindset shifts toward one of independence and possibilities
Foster independence building blocks from the earliest age
Highlight health risks and financial resources every family must know
Detail education and work options to promote community inclusion
Evaluate family- and community-based home options including the search process
The Guide presents action items and worksheets to equip you with a clear timeline and path. The resources and references sections will save you time and money in your search for information and organizations that support your family’s journey.
“As parents, we are the experts of our loved ones, and this is an excellent resource in navigating our own decisions to better support the goals and dreams of those we love.” Tara Goodwin, D.O., Adult Down Syndrome Clinic, QuestCare Dallas
Friedman intersperses relatable and inspiring stories from a wide array of families. Insights from many experts in the fields of communications, education, health, and financial planning provide the confidence and guidance for you to navigate your family’s path toward independence.
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Letter of Intent Template
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This Word template includes essential sections and prompts to complete your own Letter of Intent. In addition to a Will and Special Needs Trust, the LOI shares the wishes, dreams, hobbies, skills, fears, and favorites of your self-advocate to ensure a seamless transition for future guardians and caregivers.
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