🧠Informed Consent Issues

What Is Informed Consent?

To be considered valid, informed consent must include:

• Disclosure: The person is given clear, complete information about the decision at hand—such as risks, benefits, alternatives, and consequences of not acting.
• Comprehension: The person understands the information. This may require communication supports, plain language, or extra time.
• Voluntariness: The decision is made freely, without coercion, manipulation, or undue pressure.
• Capacity: The person has the ability to understand and make the decision. If not, a legally authorized representative may be involved—but the person’s preferences must still be honored as much as possible.
• Consent: The person gives clear permission—verbally, in writing, or through other means of communication.

❌ What Families Are Asked to Sign

When applying for services through the Massachusetts Department of Developmental Services (DDS) under the Home and Community-Based Services (HCBS) Adult Waiver Programs, families are presented with and asked to sign a deceptively simple form which states the following:

I________________(Applicant or guardian) choose to apply for the Home and Community-Based Services Adult Waiver Programs and live and receive my services in the community rather than in an ICF/ID.

The above statement is not merely procedural; it is a binding declaration that shapes the entire trajectory of care. Yet it is presented without context, explanation, or alternatives.

🚨 Why This May Violate Informed Consent

Informed consent is a foundational principle of disability rights, medical ethics, and administrative law. It requires that individuals and families:

• Receive clear, unbiased information about all available options

• Understand the benefits, risks, and limitations of each pathway

• Have the opportunity to ask questions and visit settings before making a decision

The DDS waiver enrollment process fails this standard in several ways:

Required for Informed Consent	DDS Waiver Reality
Explanation of ICF/ID	None provided
Opportunity to tour ICF/ID	Not offered
Comparison of services	No side by side comparison
Disclosure of rights waived	Not explained
Time to consider alternatives	Often rushed

🏥 What Is an Intermediate Care Facility for Individuals with Intellectual Disabilities (ICF/IID)—and Why It Matters

An Intermediate Care Facility for Individuals with Intellectual Disabilities (ICF/ID) is a federally regulated residential option that offers:

• 24/7 medical oversight

• Integrated habilitative services

• Legal protections under Title XIX of the Social Security Act

By signing the waiver form, families waive access to ICF/ID care—often without knowing what it is, where it exists, or how it compares to community-based services. This is not choice. It is coercion disguised as paperwork.

🚫 Constructive Denial: A Barrier to True Choice

Constructive denial occurs when families are technically eligible for certain services, such as ICF/ID care, but are effectively prevented from accessing them due to lack of information, omission of options, or procedural obstacles. In the context of DDS waiver enrollment, families may never be told that ICF/IID placements are available or appropriate, nor are they provided with meaningful opportunities to explore these settings. This systematic withholding of information and alternatives functions as a de facto denial, stripping families of the chance to make informed decisions about their loved ones’ care. As a result, the process undermines the principle of free and informed choice, leaving families to navigate complex care decisions without the transparency and support they deserve.

📢 Our Position

The Saving Wrentham and Hogan Alliance calls for:

• Immediate reform of DDS waiver enrollment procedures

• Mandatory disclosure of ICF/ID options, including tours and written comparisons

• Legal review of current consent practices under federal Medicaid law

• Restoration of true choice for families navigating complex care decisions

🧭 What You Can Do

• Share your story: If you or a loved one were denied informed consent, we want to hear from you.

• Join our town halls: Participate in listening sessions to shape future advocacy.

• Support our legal efforts: Help us challenge systemic violations and restore transparency.