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Care Planning & Advocacy Checklist

A practical set of questions you can bring to planning meetings and provider check-ins. The goal is simple: get clear answers, request documentation when needed, and confirm how supports match the person’s plan and rights.

75+Questions to Consider
9Key Areas
RightsCentered
How to Use This Checklist: Pick the sections that match your situation. Ask for plain-language explanations. If a policy, plan, or report is referenced, ask for a copy or for a written summary you can keep.
Massachusetts baseline (quick reality-check):
  • DDS plans supports through the Individual Support Plan (ISP) under 115 CMR 6.00. The ISP is developed with the person, family or guardian, and the DDS team.
  • DDS uses a Positive Behavior Supports (PBS) framework in its dignity standards (115 CMR 5.00). When a plan includes restrictive procedures, Human Rights Committee review applies under 115 CMR 3.09.
  • Suspected abuse or neglect of an adult with a disability is reported to the Disabled Persons Protection Commission (DPPC) 24-hour hotline at 1-800-426-9009.
  • Medication administration in certain community settings is governed by the Medication Administration Program (MAP) within the Department of Public Health.
  • MassHealth Day Habilitation is governed by 130 CMR 419.000, with payment levels (Level 1–4) set through the DH Leveling Tool and prior authorization.
Official sources used for the statements above:

Your Progress

0% Complete (0 of 0 items checked)

Daily Living & Community Participation

Support for routines, independence, and meaningful time in the community

  • What supports are in place to build (or maintain) independence in daily routines the person cares about?
    MEDIUM
  • How does the program make sure activities are age-appropriate and respectful of personal dignity?
    HIGH
  • How does the team decide whether community participation is working (and what data or examples can they share)?
    MEDIUM

Therapy & Clinical Supports

Clinical services, coordination, and follow-through

  • Which therapies are involved (OT/PT/SLP or others), and how often does the person actually receive them?
    HIGH
  • If behavior support is needed, who is responsible for assessment and plan development (name/role), and how is progress tracked?
    HIGH
  • What written documentation will be shared (progress notes, summaries, incident follow-up, data snapshots)?
    HIGH
  • If a plan includes restrictive procedures, when and how is Human Rights Committee review handled?
    HIGH
  • How are therapy targets coordinated with the person’s ISP goals (so the plan isn’t “separate from real life”)?
    MEDIUM
  • If mental health supports are needed, what is the referral path and what happens while waiting?
    MEDIUM
  • What staff training is required to implement the clinical plan, and who verifies competency?
    MEDIUM
  • What can families/supporters do at home to reinforce goals, and what written guidance can be provided?
    LOW

Staffing, Safety & Training

Who is supporting the person, and how safety is maintained

  • What is the staffing ratio during routine times and during higher-risk situations (community, medical needs, behavioral escalation)?
    HIGH
  • If staffing is short, what changes (if any) to schedules, community access, or supervision happen—and how are those decisions documented?
    HIGH
  • What are the written procedures for medical emergencies, behavioral crises, and environmental emergencies?
    HIGH
  • What de-escalation / crisis-response training is used, and how often is it refreshed?
    HIGH
  • If Positive Behavior Supports (PBS) strategies are used, how does staff document “what happened” and “what worked” so the team can learn and adjust?
    HIGH
  • What is the turnover rate for direct-support staff serving this person, and what’s the continuity plan when staff change?
    MEDIUM
  • What screening/background-check process does the provider use for staff, and how can families confirm compliance?
    HIGH
  • What ongoing training is required each year (and how is it documented)?
    MEDIUM
  • What is the step-by-step process for reporting suspected abuse, neglect, or rights concerns—and what happens next?
    HIGH

Rights Protection & Advocacy

How rights are affirmed, reviewed, and protected

  • Who is responsible for rights oversight at the program (name and role), and how can families contact them?
    HIGH
  • How does the provider track satisfaction and quality of life feedback (and what do they do with the results)?
    HIGH
  • How are guardians/families/supporters invited into planning, feedback, and problem-solving?
    MEDIUM
  • How are rights and choices explained in everyday language to the person (and supporters), and where is that documented?
    HIGH
  • If an independent advocate is needed, what local options are available and how does the team support access?
    MEDIUM
  • How does the team support real decision-making—not just “informing”—especially when communication is complex?
    HIGH
  • What is the grievance/complaint pathway, who receives it, and what response timeline can families expect?
    HIGH
  • If any rights restrictions or restrictive procedures are used, how are they justified, reviewed, and reduced over time?
    HIGH

Quality Assurance & Outcomes

How performance is monitored and improved

  • What were the most recent licensing/certification findings (if applicable), and what corrections were required?
    HIGH
  • What quality reviews or monitoring has happened recently, and what did the provider do in response?
    HIGH
  • What improvement work is active right now (specific projects, timelines, owners)?
    MEDIUM
  • What outcome data is tracked (health/safety/community access/ goals), and how often is it reviewed with the team?
    MEDIUM
  • How does performance compare to similar programs, and what’s the evidence (not just opinions)?
    MEDIUM
  • What external accreditations/certifications exist (if any), and what do they actually require in practice?
    LOW
  • How are participant/family suggestions logged, acted on, and closed out (with proof)?
    MEDIUM
  • When something goes wrong, what is the provider’s process for learning from it—and how can families see the follow-through?
    MEDIUM

Individual Support Plan (ISP) & Goals

Planning, measurable goals, and plan updates

  • When is the next ISP meeting, and what needs to happen before the meeting (drafts, input, data summaries)?
    HIGH
  • If needs change, how can the team request an update before the next annual review—and who schedules it?
    HIGH
  • How is the person (and guardian/family, if applicable) included in goal-setting—and how do we capture their actual preferences?
    HIGH
  • What data is collected for each goal, how often, and who reviews it?
    HIGH
  • Are goals measurable and meaningful (clear “what,” “where,” “how often,” and “how we’ll know”)?
    HIGH
  • How are interests, strengths, and long-term direction captured in the plan—not just needs?
    MEDIUM
  • If progress stalls, what’s the plan adjustment pathway (who decides, what evidence is needed, what changes are allowed)?
    MEDIUM
  • Are cultural, language, and religious preferences documented and respected in day-to-day supports?
    LOW

Communication & Family Involvement

Transparency, updates, and response expectations

  • What communication channels are available (phone/email/text/ portal), and what’s the expected response time?
    HIGH
  • How often will we receive updates on goals, incidents, and major changes—and in what format?
    HIGH
  • Who is the primary contact (name/role), and who is the backup if they’re out?
    HIGH
  • Are schedules shared in advance, and how do we learn about cancellations or community changes?
    MEDIUM
  • How quickly are families notified about injuries, medical events, or significant behavioral incidents?
    HIGH
  • Are families invited to meetings/trainings when relevant, and how is that invitation communicated?
    MEDIUM
  • What is the documented complaint pathway for service-quality concerns, and what is the escalation step if nothing changes?
    HIGH
  • How are barriers handled (language access, technology access, communication supports)?
    MEDIUM

Community Integration & Employment

Meaningful community time and work pathways

  • What community activities are offered each week (specific examples), and how are choices made?
    MEDIUM
  • Are volunteering, internships, or skill-building opportunities available—and what are the eligibility rules?
    MEDIUM
  • What employment pathway supports exist (job development, job coaching, supported employment), and how are referrals made?
    HIGH
  • What transportation is used for community/work and what is the safety/supervision plan during transport?
    HIGH
  • How are interests and career goals identified (tools, interviews, observation), and how is progress measured?
    MEDIUM
  • How does the program support real relationships and belonging in the community (not just “outings”)?
    MEDIUM

Medical Care & Health Management

Health supports, documentation, and medication safety

  • What training is required for safe transfers/mobility support (if applicable), and where is competency documented?
    HIGH
  • What nursing coverage exists (on-site/on-call), and how are higher-acuity needs supported?
    HIGH
  • If medications are administered, which process is used (e.g., MAP where applicable), and how is error prevention handled?
    HIGH
  • How are personal-care preferences respected (privacy, pacing, choice, and dignity)?
    MEDIUM
  • How are dietary needs documented, communicated, and followed consistently?
    MEDIUM
  • What are the written protocols for choking/falls/seizures or other predictable emergencies for this person?
    HIGH
  • How are privacy and dignity protected during health supports (space, consent, documentation boundaries)?
    MEDIUM
  • How are adaptive equipment needs assessed and kept current (who owns it, who maintains it, who trains staff)?
    MEDIUM
  • How are appointments coordinated, and how do families receive updates after visits?
    HIGH
  • How are follow-up recommendations tracked to completion (and what is the escalation plan if follow-up doesn’t happen)?
    HIGH

Advocacy Tips

  • Bring specifics: names, dates, examples, and a short list of priorities.
  • Ask for written proof: policies, plans, data summaries, and training documentation.
  • Clarify the decision-maker: who can approve a change today, and who can’t.
  • Track follow-ups: “What exactly will happen next, and by when?”
  • Keep your own notes: meeting outcomes and what you were told (so you can compare later).