Security Risk Assessment Guide for a 22q Deletion Syndrome Clinic

A security risk assessment in a 22q deletion syndrome clinic is a person-centered review of safety in daily life—not a judgment about someone’s abilities or independence. It can help the patient, caregivers, and care team identify health, behavioral, social, financial, and online concerns and agree on practical supports.

Because needs and abilities vary widely, assess the individual rather than assuming risk from a 22q11.2 deletion diagnosis. Ask about strengths, preferences, communication needs, and the person’s own goals, then revisit the plan as circumstances change.

Which clinicians and caregivers should participate in a security risk assessment?

Include the person with 22q11.2 deletion syndrome as the central participant. Ask whom they want involved and explain the purpose of the assessment in accessible language. Depending on the person’s needs, the team may include a primary care clinician or 22q11.2 specialist, genetics, cardiology, endocrinology, behavioral health, social work, and developmental or rehabilitation professionals.

With the patient’s permission and as appropriate to their age and decision-making arrangements, caregivers can describe changes they observe at home, school, work, or in the community. Educators, therapists, and support staff may also offer relevant information. Keep information sharing limited to what is needed for care and safety.

Whenever feasible, speak with the patient privately for part of the visit. A private conversation can make it easier to discuss relationships, bullying, money, or distress. Offer communication accommodations, extra time, visual supports, or concrete questions when helpful. A diagnosis alone does not establish incapacity; evaluate decision-making abilities in the specific context and support the person to participate.

For a broad model of 22q11.2 deletion syndrome multidisciplinary care, the American Academy of Pediatrics recommends coordinating specialty care and developmental and psychiatric follow-up according to the patient’s needs.

What medical and developmental assessments should the clinic coordinate?

Review the person’s current health conditions, medications, daily routines, and any recent changes that could affect safety or independence. Coordinate care with the patient’s existing specialists rather than duplicating their evaluations. Medical issues can sometimes contribute to changes in mood, energy, thinking, or behavior.

• Cardiac evaluation: Check whether recommended cardiology follow-up is in place, including assessment of known congenital heart conditions and related symptoms.
• Endocrine evaluation: Review the person’s history and monitoring plan for calcium, parathyroid, and thyroid concerns. Symptoms or acute illness may require additional clinical assessment.
• Neurologic and general health review: Ask about seizures or seizure-like episodes, sleep, pain, hearing, vision, and other concerns that may affect communication, judgment, or everyday functioning.
• Developmental and adaptive functioning assessment: Consider how the person manages daily living, communication, social situations, boundaries, travel, medication routines, and money. Assess actual skills and support needs instead of relying on a diagnosis or IQ score alone.
• Education and transition planning: When relevant, coordinate with school, vocational, or adult-service teams so that accommodations and supports reflect the person’s current abilities and goals.

The AAP health-supervision report for children with 22q11.2 deletion syndrome outlines age-based medical and developmental monitoring, including cardiac evaluation, calcium and thyroid surveillance, and referral for developmental assessment. Individual recommendations should be confirmed with the patient’s clinicians.

How should clinicians monitor behavioral and psychiatric changes?

Establish a useful picture of the person’s usual mood, sleep, communication, thinking, activity, and daily functioning. Ask the patient and, when appropriate, people who know them well what has changed and when. New or worsening anxiety, low mood, irritability, withdrawal, confusion, unusual beliefs or perceptions, or decline in everyday skills merits a thoughtful assessment—not an automatic assumption that the behavior is “part of the syndrome.”

Consider both mental and physical health, recent stressors, medication changes, sleep disruption, and experiences such as bullying or conflict. The 22q11.2 deletion syndrome adult clinical practice recommendations emphasize awareness of a person’s baseline and monitoring changes in emotions, thinking, sleep, fatigue, behavior, and overall functioning.

Use direct, specific questions and allow enough time for the person to answer. If the person describes immediate danger, suicidal thoughts, or a sudden severe change in mental status, arrange urgent evaluation according to clinical judgment and local emergency procedures.

How can the clinic assess bullying, abuse, and exploitation risks?

Ask about safety in a neutral, non-leading way, preferably in private and without a possible source of harm present. Questions can cover school or workplace bullying, unwanted touching, threats, coercion, controlling behavior, neglect, and whether anyone pressures the person to give away money, possessions, passwords, or personal information. Explain the limits of confidentiality before discussing sensitive topics.

Possible warning signs include unexplained injuries or missing belongings, fearfulness around a particular person, sudden isolation, another person preventing the patient from speaking privately, or unexpected changes in spending or account access. These signs do not by themselves prove abuse or exploitation; they are reasons to listen carefully, document objective observations, assess immediate safety, and follow up.

For financial exploitation screening, ask whether the person understands recent financial decisions and feels free to say no. Unexplained withdrawals, unpaid bills, new account access for another person, or unusual transfers can prompt further inquiry. The Consumer Financial Protection Bureau’s resource for people with disabilities describes potential warning signs and ways to seek assistance.

If you suspect abuse or neglect, follow applicable state or local reporting requirements and clinic policy; requirements and reporting pathways vary. For an adult, the Administration for Community Living’s guidance on suspected abuse, neglect, or exploitation explains how to find Adult Protective Services resources. If someone is in immediate danger, contact emergency services.

What internet safety and safe-relationship guidance should families provide?

Offer practical internet safety counseling that preserves connection and independence while matching the person’s age, communication style, and support needs. Discuss what information should remain private, how to block or report unwanted contact, and how to ask a trusted person for help if an online interaction feels confusing, threatening, or pressured. Avoid shaming the person for mistakes or for seeking relationships.

Talk through safe relationships both online and offline. Reinforce that consent is ongoing, that a person can change their mind, and that no one should demand passwords, money, private images, or secrecy. Role-play simple responses—such as “I need time to think,” “I’m not sharing that,” or “I want to ask someone I trust”—and identify trusted adults or supporters the person can contact.

Families can agree on privacy settings, device rules, and check-ins together, then review them as the person’s skills and circumstances change. For children and teens, the American Academy of Pediatrics’ digital-media guidance recommends ongoing conversations about privacy and online experiences rather than relying only on screen-time limits.

When should risk assessments be repeated or updated?

There is no single risk-assessment interval that suits every person or situation. Revisit safety at routine care visits and whenever the patient, caregiver, or team reports a meaningful change. The clinic can set a reminder based on the person’s needs, but should not present a particular schedule as a universal federal requirement.

Update the assessment when the person changes schools, jobs, living arrangements, caregivers, or support services; enters adolescence or adulthood; begins managing more money or online activity; experiences a new health or psychiatric concern; or reports bullying, coercion, abuse, or exploitation. After an incident, review immediate safety, what support worked, and what should change in the plan.

Document the patient’s perspective, identified risks and strengths, agreed actions, responsible people, and follow-up timing. Keep the plan specific and proportionate, and review it with the patient so they understand and can help shape the next steps.

Conclusion

A useful 22q deletion syndrome clinic security risk assessment brings the patient’s voice together with coordinated medical, developmental, and psychosocial care. Ask about changes and safety directly, support autonomy, act on concerns using local procedures, and update the plan when needs or circumstances change.

FAQs.

Who should be involved in a 22q deletion syndrome clinic security risk assessment?

The person with 22q11.2 deletion syndrome should be central to the assessment. With their permission and as appropriate, involve caregivers and relevant clinicians, such as primary care, genetics, cardiology, endocrinology, behavioral health, and social work. Include educators or support staff when their information is relevant and can be shared appropriately.

What health and developmental areas should the assessment cover?

Review relevant cardiac and endocrine care, medications, neurological or sleep concerns, mental health, communication, learning, adaptive functioning, and daily living skills. Also ask about safety in relationships, school or work, finances, and online activity. Tailor the assessment to the person rather than assuming needs from the diagnosis.

How can caregivers identify signs of exploitation or abuse?

Pay attention to what the person says and to changes such as unexplained injuries or missing belongings, fear around a particular person, isolation, or unusual financial activity. These signs are not proof, but they warrant a private, supportive conversation and appropriate follow-up. Follow local reporting requirements; contact emergency services if there is immediate danger.

When should the clinic repeat a security risk assessment?

Review safety during routine care and whenever there is a meaningful change in health, behavior, living situation, relationships, school or work, finances, or online activity. Repeat or update the plan after a safety concern or incident, and set follow-up timing according to the individual’s circumstances.