3. Patient Rights

Declaration of Human Rights

• Post–World War II atrocities ➔ global demand for explicit protections of human dignity.
• Universal Declaration of Human Rights ( 1948 ):
  • Affirms the “inherent dignity” and “equal and unalienable rights of all members of the human family.”
  • Philosophical foundation for all modern patient-rights language.
  • Links to PT practice: establishes that access to health care is a human right, not merely a commodity.

Health Insurance Portability & Accountability Act (HIPAA) 1996

• Purpose & Scope:
  • Sets national standards for safeguarding individually identifiable health information.
  • Standardizes electronic exchange of financial/administrative data ➔ reduces errors & delays.
  • Offers limited insurance portability (via COBRA) when changing jobs.
• Core Privacy Rule Concepts:
  • “Minimum necessary” use & disclosure.
  • Covered entities: providers, plans, clearinghouses, “business associates.”
• Patient-Specific Rights under HIPAA:
  • Right to access & copy records.
  • Right to know every disclosure of PHI.
  • Right to request confidential communications (e.g., alternate address, phone).
  • Right to place restrictions on who can see records.
  • Right to file a complaint for perceived privacy violations.
• Real-world PT implications:
  • Use secure EMR; do not discuss case details in elevators.

Patient Protection & Affordable Care Act (ACA) 2010

• Insurance Mandate:
  • Original requirement to obtain coverage; monetary penalty removed 2017, but many states maintain their own mandates.
• Medicaid Expansion:
  • To 138\% of Federal Poverty Level (FPL) ⇨ approximately \$21{,}597 individual income projected for 2025.
  • Optional at state level since 2012 (Supreme Court ruling).
• Consumer Protections:
  • No increased premiums for pre-existing conditions or sex.
  • Adult children may remain on parents’ plan until age 26.
  • Out-of-pocket maximums; free preventive services.
  • Easier-to-read plan summaries; internal + external appeals.
  • Anti-retaliation clauses for whistle-blowing employees.

Patient Bill of Rights

• Issued by U.S. Advisory Commission on Consumer Protection & Quality.
• Goals: fairness, problem-solving pathway, patient engagement, strong provider–patient bond.
• Key Elements:
  • Participation in all treatment decisions.
  • Full disclosure of information (diagnosis, options, costs).
  • Confidentiality of PHI (complements HIPAA).
  • Respect & nondiscrimination.
• AMA provides supplemental guidelines for physicians & extends ethos to PTs.

Major Accessibility Legislation

Section 504 Rehab Act 1973

• First U.S. civil-rights statute for disability.
• Defines “handicapped” person as one with physical or mental impairment that substantially limits \ge 1 major life activity.
• Bars discrimination in all programs receiving federal funds.
• Precursor to ADA ➔ concept of qualified individual who can meet essential criteria with/without accommodation.

Education for All Handicapped Children Act 1975 (EHA) → Individuals with Disabilities Education Improvement Act (IDEA) 2004

• Guarantees Free & Appropriate Public Education (FAPE) in the Least Restrictive Environment.
• Requires evaluation + Individualized Education Program (IEP); parents integral in planning.
• IDEA structure: • Part C: Early intervention 0-2 yrs. • Part B: Special education 3-21 yrs.
  • 7.5\text{ million} students (≈15\% of U.S. public-school enrollment, 2022-23).
• PT/OT/SLP services embedded as “related services.”

Americans with Disabilities Act (ADA) 1990; Amend. 2008

• Broad civil-rights law ➔ equal opportunity in employment, public services, and more.
• Expanded definition of disability includes major bodily functions (immune, neurological, etc.).
• Major Life Activities (examples): caring for oneself, seeing, hearing, walking, learning, working, etc.

Five Primary Titles

1. Title I – Employment (≥15 employees):
   • No discrimination against qualified individuals who meet essential job functions with reasonable accommodation.
   • Employer must provide accommodation unless undue hardship.
   • Enforcement: EEOC.
   • Reasonable accommodation examples:
     • Task reassignment, reserved parking, adaptive tech/software, flexible scheduling, reassignment to vacant post.
   • Undue hardship factors: nature/cost, org.
     size/resources, facility impact, geographic separateness. Ultimately judged on net cost.
2. Title II – Public Services: state/local gov’t & public transit. Physical access, web/mobile content (2024 regs). Agencies: DOJ, DOT, DOE, HUD.
3. Title III – Public Accommodations: nearly every private business open to public.
   • Must remove architectural barriers if “readily achievable.”
   • Covers service animals, communication aids (Braille, captioning), design standards (ramps, bathrooms, parking).
   • Exemptions: religious orgs, private clubs.
4. Title IV – Telecommunications: Functional equivalence for hearing/speech impairments.
   • Technologies: TTY, TDD, TRS. Regulators: FCC.
5. Title V – Miscellaneous: attorney fees, retaliation, insurance coverage, state immunity.

Common Barriers Encountered by Individuals with Disabilities

• Physical: narrow doorways/hallways, stairs without ramps, high thresholds, heavy doors.
• Sensory: lack of visual alarms, absence of captioning or tactile signage.
• Environmental: high-pile carpeting, cluttered furniture arrangement.
• Transportation: inaccessible bus stops, limited paratransit.
• Attitudinal: stigma, “inspiration porn,” provider bias.

Role of Physical Therapists

• Use person-first language:
  • “Person who uses a wheelchair” ≠ “wheelchair-bound.”
  • “Accessible restroom” ≠ “handicapped restroom.”
• Strategies:
  • Model respect; ask patients how they prefer to be described.
  • Anticipate + remove barriers during plan of care.
  • Advocate within interprofessional teams; reference legal protections when ordering DME or facility modifications.
  • Educate peers to avoid inspiration porn (portraying disability itself as inspirational).

Informed Consent in Physical Therapy

• Legal + ethical requirement before any intervention (exam, treatment, research).
• Six Essential Components:
  1. Clear explanation of proposed intervention(s).
  2. Expected benefits/outcomes.
  3. Material risks & side effects.
  4. Viable alternatives (including no treatment).
  5. Consequences of refusal/withdrawal.
  6. Offer & opportunity to ask questions; assess comprehension (teach-back).
• Must be given in plain language & culturally/linguistically appropriate; document in EMR.
• Special considerations: minors, cognitive impairments = obtain consent from legal guardian but still seek assent from patient when possible.
• Example Classroom Scenario (Black Widow Aversion Therapy):
  • Therapist 1 – method (handling live spider).
  • Therapist 2 – benefits (desensitization ➔ reduced phobia → improved QoL).
  • Therapist 2 – risks (bite → neurotoxic reaction, anxiety attack).
  • Therapist 3 – alternatives (systematic desensitization with VR, cognitive-behavioral therapy, medications).
  • Therapist 3 – natural course (phobia persists → activity limitations, avoidance behaviors).
  • Therapist 4 – Q&A, verify understanding, document signed consent.
• Transfer to PT settings: same template applies to manual therapy, dry needling, high-velocity manipulations, etc.

Ethical & Practical Implications

• Ethical principles involved: autonomy, beneficence, non-maleficence, justice, veracity.
• Violating patient rights can lead to:
  • Legal liability (civil & criminal).
  • Professional disciplinary action (state board, APTA Ethics & Judicial Committee).
  • Loss of public trust.
• Proactive compliance yields better outcomes, lower readmissions, and improved patient satisfaction.

Quick Reference Figures & Values

• Poverty-level threshold for Medicaid expansion =1.38\times\text{FPL}\approx\$21{,}597 (individual, 2025 projection).
• ADA employer size threshold \ge15 employees.
• Early intervention eligibility under IDEA: ages 0–2 (Part C).
• Special education eligibility under IDEA: ages 3–21 (Part B).
• Adults able to remain on parental insurance until 26 yrs (ACA).

Study Tips & Connections

• Relate HIPAA’s “minimum necessary” principle to confidentiality in APTA Code of Ethics §2D.
• Remember “504 before 508” mnemonic: Section 504 (1973) paved way for ADA (1990).
• For exam vignettes, flag any mention of “essential job functions” or “reasonable accommodation” as Title I territory.
• Use brackets strategy: [Law] ➔ [Population Protected] ➔ [Setting Impacted] ➔ [PT Action].
• Apply informed consent checklist before every competencies practical.

Summary

• Multiple federal statutes (HIPAA, ACA, Rehab Act, IDEA, ADA) delineate and safeguard the rights of patients & persons with disabilities.
• PTs must integrate legal awareness with clinical practice: ensure privacy, remove barriers, use inclusive language, obtain thorough informed consent.
• Advocacy is a professional duty—consistent with APTA Core Value of Social Responsibility.