Online Workshop: Don’t Toss the Hot Potato! Instead, Tackle Consent, Guardianship, and Create Effective Policies

Workshop Summary

When someone says “the guardian said no” or “she hasn’t shown an interest” or “we’ll let the risk committee decide,” they’re tossing the hot potato. They’re handling a question about a person’s rights by passing it to someone else. This workshop is about actually holding the potato — and knowing what to do with it.

Note: This is a pre-recorded, 90-minute, online workshop. You’ll receive Instant access upon purchase — including downloadable resources.

Why This Workshop Exists

There is now broad agreement that people with intellectual and developmental disabilities are sexual beings. What happens next is where things fall apart. Organizations that genuinely want to do this work right get stuck on the same questions: What does consent actually mean for the people we support? What can a guardian decide — and what can they not say? What should our agency’s policy actually say? And who is supposed to answer any of this?

Patricia A. Carney has spent 40 years in human services working on exactly these questions. She approaches sexuality entirely from a human rights framework:

“I do sexuality work from a human rights perspective. We are still living and doing our services within a framework of eugenics.”

— Patricia A. Carney, M.Ed., ABD, workshop presenter

That framing matters. It means the answers to these hard questions — consent, guardianship, policy — are not primarily clinical or legal. They are about what it means to recognize someone as a full human being with the right to an adult life.

This workshop tackles three of the most avoided topics in sexuality and I/DD services: consent, guardianship, and policy. Not abstractly — with definitions, examples, legal context, and the kind of frank conversation that rarely happens in staff meetings.

Consent: What It Actually Means

Consent is a legal term, and Pat breaks it down into its three actual components:

• knowledge — understanding the facts and potential outcomes of a sexual activity
• understanding — the ability to use that knowledge to make a decision — what the law calls the “reasonable person standard”
• volition — the ability to say yes and to say no, and the ability to recognize that the other person has the same right

Those three components lead directly to a question most organizations have not answered: if we don’t help people build decision-making skills in everyday life, how can we expect them to exercise consent to sexual activity? Pat paraphrases one of Dave Hingsburger’s best-known observations on this: if we do not let people say no to peas at dinner, how do we expect them to say no to sexual activity? The ability to consent is built over a lifetime of supported decision-making — and it has to start long before there’s a relationship question on the table.

The workshop introduces the FRIES framework — Freely Given, Reversible, Informed, Enthusiastic, Specific — and addresses a fundamental misunderstanding in how consent is commonly treated in services:

“Consent is a strong affirmation, not the absence of no.”

— Patricia A. Carney

We work with people who have spent their lives learning to comply. They will acquiesce. That means “they did not say no” is never enough. Pat’s recommendation is concrete: start asking permission every time you are going to touch a person’s body or any of their belongings — not just in contexts explicitly about sexuality, but every time. Consent has to live in the everyday interactions of a person’s life before it can be meaningful in a sexual context.

Pat also draws a critical distinction between capacity and capability. Capacity is a legal determination — a person has been adjudicated incapacitated by a court. Capability is something else entirely: how much of a person’s learning potential have they actually had the opportunity to develop? Most people we work with have a capability level far below their actual capacity to learn. The question is never “can they learn this?” It is “have they had the chance?”

Guardianship: What It Is — and What It Isn’t

The guardianship section of this workshop addresses one of the most consistently misunderstood relationships in I/DD services. Pat is direct:

“The purpose of guardianship is protection of rights, not denial of rights.”

— Patricia A. Carney

Guardianship does not automatically strip a person of all rights. It does not give a guardian unlimited authority over a person’s life choices. A guardian who says, “I don’t want her to wear makeup,” is not acting within the scope of guardianship — there is no risk. The guardian’s role relates to the level of risk in important decisions, and decisions about a person’s sexuality education, their relationships, and their personal expression typically don’t meet that bar.

What has happened, Pat explains, is that the system has failed guardians — who are almost always terrified parents — by never explaining what the job actually is. These are parents who fought for mandated services through school for 15 years, arrived at adult services already exhausted and suspicious, and were handed a guardianship decree without anyone explaining how it is different from being a parent of a minor. They are not controlling. They are scared, and they have been left to fill in the blanks themselves.

“The law is no substitute for development of a good relationship with a person’s family. That’s it.”

— Patricia A. Carney

The workshop walks through what guardianship actually covers and what it doesn’t, the difference between full and limited guardianship, alternatives such as healthcare proxies and supported decision-making, and what to do when a guardian’s wishes conflict with the rights of the person you support. Pat also addresses the transition period — when school systems push families toward guardianship before a student turns 18 — and what that pressure is actually about (liability, not the young person’s needs).

“A guardian is not your supervisor. A guardian is not a substitute for the mission of your organization or the regulations of your state.”

— Patricia A. Carney

Policy and What You Can Start Today

An effective sexuality policy does not have to be complicated. It does have to be honest about what your organization believes, clear enough that staff know what is expected of them, and treated as a living document — not something filed away after new-hire orientation. Pat’s two core assumptions for this work:

“Everybody can learn something without question. The second one is everybody wants to learn something. And our job is to figure out what they want to learn and then how best to teach them.”

— Patricia A. Carney

Everything else follows from those two assumptions. If you build your individual support plans around them, if you put a sexuality objective in every relevant ISP, if you commit to building decision-making skills rather than compliance, the policy is just the document that reflects the work you’re already doing.

Who This Workshop Is For

This workshop is for self-advocates who want to understand their rights around consent and guardianship. It is also for direct support professionals, educators, clinicians, agency administrators, and anyone in I/DD services who has ever felt stuck on a consent question, unsure how to respond to a guardian who says no, or uncertain about what a sexuality policy should actually include. If you work in an organization that supports adults with I/DD, this workshop is for you.

What You Will Learn

By the end of this workshop, you will be able to:

Define the three components of informed consent — knowledge, understanding, and volition — and explain why each one must be actively supported, not assumed

Understand the FRIES framework (Freely Given, Reversible, Informed, Enthusiastic, Specific) and apply it in conversations with the people you support and with families

Explain why building everyday decision-making skills across all areas of a person’s life is the foundation of consent education

Describe what guardianship actually authorizes — and what it doesn’t — including the difference between full and limited guardianship, alternatives to guardianship, and the guardian’s role in decisions about sexuality

Work more effectively with family guardians by understanding the fear and history that shapes their positions, and knowing when and how to push back on guardian wishes that conflict with a person’s rights

Develop or strengthen a sexuality policy that reflects a rights-based approach and gives staff clear guidance they can actually use

Workshop Presenters

Patricia A Carney, M.Ed., ABD, Consultant in Sexuality and Human Rights. Pat has 40 years experience in human services, working with people who have developmental and intellectual disabilities. Starting as a direct support professional, Pat has done direct service throughout her career as an educator/consultant. As a trainer and advocate, Pat’s focus areas are sexuality education for individuals served, staff development in the areas of sexuality and developmental disabilities, and the human rights of people with developmental and intellectual disabilities. For Pat, sexuality and human rights are inseparable parts of a larger discussion acknowledging the humanity and personhood of individuals with developmental and intellectual disabilities. Pat has published articles in national disability publications and presented on sexuality and rights regionally, nationally, and internationally. Pat has a M.Ed. in Health Education and is a matriculating Ph.D. candidate at the University of Massachusetts Boston in the School for Global Inclusion and Social Development.

Katherine McLaughlin, M.Ed., AASECT Certified Sexuality Educator, is the Founder, CEO, and Lead Trainer for Elevatus Training. She has been a sexuality educator and trainer for over 30 years. As a national expert on sexuality and intellectual and developmental disabilities, she trains professionals and parents, as well as people with I/DD, to become sexual self-advocates and peer sexuality educators.⁠