genus perspective
Keeping the person’s voice in family decisions
A September 2024 ACL announcement put attention on protecting people’s rights in decision-making systems. Our perspective brings that principle into everyday care: support understanding and participation before assuming someone else should decide.
What we found in the news
On September 13, 2024, the Administration for Community Living announced grants addressing guardianship protections (opens in a new tab). Some funded projects proposed alternatives that would preserve more individual choice. These were project plans, not reported results.
The Arc’s health position statement, reviewed in 2024 (opens in a new tab), also emphasizes:
“Opportunities to ask questions and receive answers about the proposed treatment in understandable and understood language;”
— The Arc
That statement concerns people with intellectual and developmental disabilities. We see a broader practical reminder for families: being offered information is different from being supported to understand and respond to it.
Why this matters to us
A family can move quickly when it is trying to help. Someone finds an option, another checks the timing, and a plan is almost complete before the person at its center has had a chance to say what they want.
At genus, we think participation belongs at the beginning. A person may need more time, a different explanation or someone they trust beside them. Those needs should prompt a conversation about support, not an automatic assumption that their views do not count.
Everyday preferences matter alongside major decisions. Where to spend an afternoon, who visits and how information is shared all shape someone’s experience of care.
Make space for an actual choice
Our suggestion is to slow down one pending family decision. For an everyday arrangement, such as trying a local activity, ask the person what would make it worthwhile for them.
Offer information in a form they find useful. Avoid presenting one option as already settled. Give them room to ask questions privately or take time before responding.
Consider:
- Have we asked what matters to the person?
- Is the explanation understandable to them?
- Are we listening to a preference that differs from our own?
- What support would help them participate more fully?
Check back after an arrangement begins. Agreement to try something is not a reason to ignore how the experience feels.
These are our everyday conversation suggestions. Formal authority and health-care decisions can involve individual circumstances and legal requirements; families should use the relevant professional guidance rather than treating a shared plan as authorization.
The genus connection
Today, the genusConnect Care App (opens in a new tab) supports enabled conversations, events and tasks for invited community members. Features and access depend on the organization’s configuration.
Those tools can keep an agreed preference and practical next step visible to the appropriate people. They do not assess decision-making capacity or grant legal authority. Our mission is to connect support around the person, which includes paying attention to whose voice is shaping the plan.
One question to take away
What would help the person at the center of this decision have a fuller say?
Supporting references
- ACL Awards Over $1.8M in Grants To Improve Protection for Rights of People Under or at Risk Of Guardianship or Conservatorship (opens reference preview; direct link opens in a new tab)
Administration for Community Living · 2024-09-13
Announcement of funded projects, including exploration of less restrictive alternatives. Describes planned work, not evaluated outcomes.
- The Arc’s Position Statement on Health (opens reference preview; direct link opens in a new tab)
The Arc
Advocacy position statement marked Reviewed/Revised 2024. The source gives no exact day for that revision; the original page date is April 7, 2019.
