January 7, 2025
The Ethics and Necessity of Video Monitoring in Group Homes: A Case for Nuanced Protection Measures in Kentucky
Members of the Kentucky General Assembly:
The intersection of privacy rights and protection measures for individuals with severe disabilities presents a complex challenge in disability advocacy. Recent legislation proposed in Kentucky has brought this debate to the forefront, highlighting the critical need for nuanced approaches to safeguarding our most vulnerable populations.
The National Council on Severe Autism (“NCSA”) urges Kentucky honorable legislators to SUPPORT 2025 SB 30.
The scope of this issue has become increasingly pressing as recent CDC data reveals that 26.7% of individuals with autism spectrum disorder have profound autism, requiring intensive, lifelong support. This significant population faces unique challenges that demand specialized protection measures, particularly in residential care settings.
Individuals with profound autism are more likely to have intersectional disparities that enhance their risk of abuse, neglect, and harm. The CDC reports that individuals with profound autism are more likely to be girls, from racial and ethnic minority groups, and from households with a low socioeconomic status, more commonly born early or at low birth weight and to have self-injurious behaviors, seizure disorders, and lower adaptive scores.
The vulnerability of individuals with severe intellectual disabilities in care settings is well- documented. The Disability and Abuse Project found that over 70% of individuals with developmental disabilities in group homes have experienced neglect, assault, or abuse — an alarming reality that cannot be ignored. This statistic becomes even more concerning when considered alongside the 2018 NPR investigation revealing the heightened risk these individuals face all throughout their daily lives, particularly from those in positions of trust in places where they should be protected and safe, including a risk of sexual assault seven times greater than individuals without intellectual disabilities.
The current opposition to camera legislation in Kentucky reveals a fundamental misunderstanding of the distinct needs of individuals with severe forms of autism and related disorders who require constant support for safety and supervision. For this population, traditional concepts of privacy must be reconsidered within the context of their daily reality. These individuals require high levels of assistance with intimate activities of daily living, making conventional privacy standards both impractical and potentially dangerous when prioritized over protection.
Further, NCSA contends the overreach of state agencies acting as a superseding entity to a guardian’s decision-making provides an urgent need for the Commonwealth of Kentucky to establish clear presumptions favoring guardian decisions absent specific evidence of harm to protect guardian Constitutional rights.
“A guardian of a ward shall have the powers and responsibilities of a parent regarding the ward's support, care, and education,” according to KRS 387.065(1). Court-appointed guardians and conservators assume the legal authority to make decisions on behalf of the person with a guardian. This transfer of decision-making power creates constitutionally protected liberty interests for guardians in several key respects:
Guardians step into the shoes of the person with a guardian, inheriting their fundamental rights regarding life decisions such as, but not limited to, entering contractual relationships, determining living arrangements, and consenting to medical procedures [KRS 387.590(7)]. Just as parents have constitutionally protected interests in directing the care and upbringing of their children, guardians possess similar liberty interests in directing the care of their wards.
The court appointment itself creates legitimate expectations and reliance interests that trigger due process protection. Having formally designated guardians as primary decision-makers, states cannot arbitrarily override guardian authority without violating due process principles. As such, Kentucky law explicitly and solely grants the District Court authority to determine a guardian’s soundness [KRS 387.090]. The KRS on guardianship does not grant any authority to any other state agency or committee (e.g. Human Rights Committee) to act with superseding authority or decision-making powers over a guardian.
The intimate relationship between guardian and ward implicates fundamental rights of association and family integrity. Many guardians are family members who maintain deep emotional bonds with their wards. The Supreme Court has consistently protected family relationships from unwarranted state interference (Stanley v. Illinois, Wisconsin v. Yoder, Washington v. Glucksberg, Troxel v. Granville).
NCSA endorses the use of appropriate technological support measures, including cameras and recording devices, recognizing them as essential tools for protection with this most vulnerable population. This position aligns with the Americans with Disabilities Act's concept of "reasonable accommodation," viewing cameras as analogous to other assistive devices that enable access to safety and protection.
2025 SB 30’s optional approach represents a reasonable solution that acknowledges the full spectrum of needs within the disability community. It does not mandate universal surveillance but instead provides guardians with an additional tool for protection. This nuanced approach respects the autonomy of those who can self-advocate while protecting those who not only cannot self-advocate but also cannot report details of harm to pursue justice if abused.
The case of Caroline in Kentucky, who has suffered 117 unexplained injuries, exemplifies the urgent need for such legislation. This is not an isolated incident but rather a reflection of a systemic problem in residential care settings. According to recent advocacy reports, better safety measures for long-term care residents in Kentucky are critically needed, particularly for those who cannot advocate for themselves.
Critics of the legislation often frame the debate as a binary choice between privacy and protection creating a dangerous false dichotomy. This framework fails to acknowledge the reality that for individuals requiring round- the-clock care, privacy in its traditional sense is already compromised – if not impossible – by the nature of their care needs. The more pertinent question becomes how to ensure their safety while maintaining dignity. Opposing cameras does not protect the privacy of vulnerable individuals who have never had it in the first place; it only continues to protect the privacy of those who may benefit from their exploitation.
Because protection and privacy are not inherently incompatible, 2025 SB 30’s requirement for the Cabinet to establish standards for securing, maintaining, distributing, or using video recordings demonstrates that the legislation includes measures to prevent misuse and protect privacy [2(c)]. The 90-day period following enactment of the bill provides ample time for public comment and advocacy groups to help guide the Cabinet with standards that meet the full spectrum of needs within the disability community. NCSA contends advocacy genuinely rooted in protecting the rights of individuals with disabilities must focus on strengthening, not stifling, choice. Opposition to this bill cloaked as disability advocacy, thereby allowing the status quo of repeated unexplained injuries to individuals with disabilities who cannot self-advocate, is disingenuous, at best. References to current standards fail to address the lived reality of vulnerable Kentucky citizens who have suffered the consequences of the current system that has proven insufficient to protect them from harm or to ensure justice when harm has occurred.
NCSA strongly believes that person-centered support planning processes established by the Center for Medicare & Medicaid Services (CMS) intend deference to individualized choice, establishing heightened scrutiny to prevent arbitrary assaults on an individual’s agency, not to prevent individuals from options to direct personalized enhancements to security and safety. We concede a need for advocacy groups such as ours to coordinate with CMS for clarified language that better represents minors or adults who have been adjudicated as incapacitated by the Court. Nevertheless, any lingering concerns for the Commonwealth can be resolved by Loper Bright Enterprises v. Raimondo. With this 2024 overturning of the Chevron doctrine by the Supreme Court of the United States, Constitutional substantive due process rights must supersede any ambiguous or conflicting standards by federal agencies.
In its 1993 decision in Heller v. Doe by Doe, the Supreme Court of the United States upheld Kentucky’s statutory distinction between individuals with intellectual disabilities and the mentally ill, emphasizing the deferential nature of rational basis review and the state’s broad discretion in legislative classifications. This case is especially pertinent to 2025 SB 30, as the case was brought to the Supreme Court as a challenge to family and guardian rights, in the context of involuntary commitment proceedings. The Supreme Court affirmed Kentucky’s ability to provide tailored approaches for this vulnerable population, including participation by family and guardians, acknowledging family and guardians often possess intimate knowledge of the individual’s abilities and experiences. The Court reasoned that family and guardians are better positioned to contribute meaningfully in cases of individuals with intellectual disabilities. It defies logic to assume the Court would uphold guardian rights for involuntary commitment but not simply the option to install a camera. The Heller v. Doe by Doe decision remains a cornerstone in rational basis jurisprudence.
The Office of Inspector General recently found that 99% of critical incidents of people with developmental disabilities living in group homes were not reported to law enforcement or state agencies, as required.
Regulation alone has proven insufficient to protect individuals with severe developmental disabilities. A recent investigation exposed abuse of a nonverbal woman in one of the most carefully regulated group homes in the nation.
A study in the Journal of Applied Research in Intellectual Disabilities found that cases involving victims with disabilities were more likely to result in prosecution when video evidence was available. Thus, video monitoring not only serves as a preventive measure but also aids in achieving justice when incidents occur.
The CDC's emphasis on tailoring policies and programs to the profound autism population across the lifespan supports the need for specialized protection measures. This aligns with the growing recognition that one-size-fits-all approaches to disability rights often fail to serve those with the highest support needs.
This legislation represents more than a security measure; it embodies a crucial step toward justice and accountability in care settings. For individuals who cannot speak for themselves, video monitoring serves as their voice, their witness, and their protection against abuse that too often goes undetected and unpunished.
The path forward requires acknowledging that different needs within the disability community demand different solutions. The Kentucky legislation offers a balanced approach that respects individual autonomy while providing essential protections for those who need them most. As we continue to advocate for disability rights, we must ensure that our solutions address the full spectrum of needs, particularly those of our most vulnerable populations.
In conclusion, the evidence supporting Kentucky's proposed camera legislation is compelling. The high rates of abuse in group homes, combined with the unique vulnerabilities of individuals with severe disabilities, necessitate enhanced protection measures. Moreover, it honors the Constitutional dimension of guardian rights and responsibilities in our legal system. This legislation represents a thoughtful approach to balancing privacy concerns with the paramount need for protection, offering a model for how we might better serve all members of the disability community, including those who cannot advocate for themselves.
Kind regards,
Jackie Kancir
Executive Director