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Care Management & Legal Issues Section 8
THE ESSENTIAL BRAIN INJURY
GUIDE
ContributorsAlan BergmanSusan Bartlett, LCSW, CRCNancy Benoit, RN, CRRN, CCNSusan H. ConnorsHeidi Fawber, MEd, LPC, CRC, CCM, CLCPBill FrazierKevin Ann Huckshorn, PhD, MSN, RN, CADCHarvey Jacobs, PhD, CLCPLinda Michaels-Gruber, MA, CRC, CCM, CLCP, LPC, CBISTAnne P. Rohall, Esq.Margaret St. Coeur, BS, RN, CCM, CDMS
Care Management Chapter 21
Learning Objectives
Gain an understanding of the importance of
public policy advocacy for persons with brain
injury
Be able to give an example of the roles a care manager might fill in coordinating care for
a patient with TBI
Be able to discuss the importance of life care
planning for persons with brain injury
Be able to explain the function of a special
needs trust for a person with TBI
Be familiar with the sweeping provisions of
the Affordable CareAct
Be able to summarize the meaning of theOlmstead decision in light of persons with
brain injuryBe able to articulate the significance of
The Rehabilitation Act of 1973
Be able to describe the benefits of supportgroups for persons with brain injury and
their families or caregivers
Care Management TopicsCASE MANAGEMENT
LIFE CARE PLANNING
ADVOCACY & PUBLIC POLICY
SUPPORT GROUPS
CASE MANAGEMENT
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Case Management
A method to manage unique and high risk conditions
Needed by individuals whose self-care capacity is diminished
Collaborative process of assessment, planning, facilitating, care coordination, evaluation and advocacy
Practice across all health care settings
Case ManagerRoles
Communicator
Collaborator
Researcher
Coordinator
EducatorRisk Manager
Advocate
Negotiator
QualityManager
Leader
TransitionPlanner
UtilizationManager
Clinician
Case Management Domains
1. Case management processes and services
2. Resource utilization and management
3. Psychosocial and economic support
4. Rehabilitation
5. Outcomes
6. Ethical and legal practices
Domain1: Processes and Services
Case management should occur within a systematic process which allows for the navigation of the patient and family through the continuum of care
Encompasses the process on the right
Domain 2: Resource Utilization and Management
Case managers must develop strategies to oversee and protect the limited health care dollars available
They must continually evaluate medical necessity of planned health care procedures
They must continually evaluate their appropriateness and efficiency, in order to ensure that services obtained will be covered by the health plan benefits of the patient
Domain 3: Psychosocial and Economic Support
This involves: Education of the patient and
family regarding services Facilitating access to services
and funding sources Identifying resources and
supports Assessing social support
systems and caregiver burden Ensuring that caregivers are
capable as well as available
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Domain 4: Rehabilitation This domain focuses on areas pertinent to overall rehabilitation, with a clear
emphasis on vocational aspects of rehabilitation
The domain items target areas like:
Environmental modification to address accessibility barriers,
Identification of specialized services like work hardening, and
Facilitation of return-to-work with an understanding toward what accommodations or modifications may be necessary
Domain 5: Outcomes The main focus of this domain is on
the outcomes, including: Collection Analysis Reporting
This includes assessing both the quality and effectiveness of outcomes in a variety of areas including: Clinical Financial Quality of life
Domain 6: Legal and Ethical Practices Within the legal and ethical domain,
case managers have a duty to adhere to: Pertinent regulatory requirements
(e.g., ADA), Accrediting standards (personal
licensure or certification), Legal requirements (state, federal,
and local laws), Ethical standards, and Confidentiality and the protection of
patient information (e.g., HIPAA)
Case Management & Advocacy
Responsible for both educating and listening to patient Care coordination Communicating among team members Resolving disagreements Brokering of services Obtaining consent Appealing denials Establishing relationships
LIFE CARE PLANNING
Life Care Planning
When is a Life Care Plan needed?
A catastrophic injury often leaves an unexpected need for a thorough and comprehensive plan to address medical, rehabilitative, and other present and future concerns
A Life Care Plan (LCP) is often required in these circumstances
Elements of a Life Care Plan
The plan must utilize evidence-based standards of care and recognize clinical practice guidelines
It should systematically identify all the intricate details involved in dealing with a catastrophic injury from the day of the evaluation to the end of the individual’s expected lifespan
Plan should provide a blueprint for the families of persons with injuries to assist in their management and care
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Life Care Planning
Key criteria essential to a Life Care Plan (LCP) include:
Must be specific to the individual
Must reflect full understanding of injuries and resultant disabilities
Must consider possible complication or co-morbidities
Must look at both short and long term needs
Life Care PlanningLCPs have utility across a variety of different applications, including tools for:
Personal injury, product liability, and medical malpractice cases,
Families to use as a roadmap to identify services,
Management of special needs trusts,
The insurance industry for cost containment,
The elder care industry for identification of long term care needs,
Veterans with Polytrauma, and
Case managers to maximize patient recovery and identify needed services for patients with catastrophic injury
Special Needs Trusts (SNTs)
Different types of Special Needs Trusts First Party SNT aka Medicaid Payback Trust Third Party SNT Inter Vivos (during life) SNT Pooled Trust/Community Trust
Start process with an attorney and determine a trustee
Life Care Plan Checklist Projected Evaluations
Projected Therapeutic Modalities
Diagnostic Testing/Education Assessment
Wheelchair Needs
Wheelchair Accessories and Maintenance
Aids for Independent Functioning
Orthotics/Prosthetics
Home Furnishings and Accessories
Drugs/Supplies
Home Care/Facility Care
Future Medical Care-Routine
Transportation
Health and Strength Maintenance
Architectural Renovations
Future Medical Care/Surgical
Intervention or Aggressive Treatment
Orthopedic Equipment Needs
Vocational and Educational Plan
Potential Complications
Copyrighted 1989, 1994, 2001 by Roger O. Weed, Ph.D., CRC, LPC, CCM, CLCP/R, CDMS/R, FNRCA, and FIALCP, (1989, 1994, and 2001). Used with permission.
ADVOCACY AND PUBLIC POLICY
Advocacy & Public Policy
Person/organization that speaks/writes in support or defense of an individual or cause Can be family, friends, case
managers, attorneys or guardians
A self-advocate is an individual who exercises personal choice and free will for themselves
Combination of enacted legislation, regulations and judicial interpretations of federal, state and local laws
Advocates work to improve access to healthcare, education, housing, transportations, employment and income
Advocacy Public Policy
BIAA is nation’s oldest and largest brain injury advocacy organization
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Public Policy
Provides cash benefits and health care plans for those who are aged, disabled and low income
Social Security Disability Insurance(SSDI) – need sufficient prior work experience
Supplemental Security Income (SSI) –prior work experience not necessary; low income and minimal assets
Known as CHIP Covers uninsured children in families
with incomes that are too high to qualify for Medicaid
Each state has flexibility in designing program
Public Policy
Joint State and Federal Funding
Individuals who are not eligible for Medicare may be for Medicaid
Provides health care coverage for individuals with low income, chronic illnesses and disabilities who do not have private insurance at no cost
Federal funding 4 part insurance program established in 1965 Part A (no cost) – covers hospitalization, skilled nursing
facilities, home health care and hospice services Part B (premium charged) – covers physician services,
outpatient hospital care Part C (premium charged) – optional, cost-saving
managed care plan Part D (premium charged) – voluntary prescription
program 65 or older eligible regardless of work history
Public Policy
Known as ACA or “Obama-Care” Patient Protection and Affordable Care Act
(PPACA) signed into law in March 2010 A mandate on individuals and employers
to obtain or provide health insurance by 2014 or face penalties, except in the case of financial hardship and religious objections
Establishment of state-based Health Benefit Exchanges (also known as State Insurance Exchanges) effective in 2014 with an essential benefits package
Essential benefits package requires: Coverage for hospitalization,
physician services, Prescription drugs, Rehabilitative and habilitative
services and devices, Vision and oral pediatric
services, Mental health services, and Chronic disease management
services
Public Policy
Health insurance company reforms phased in between 2010 and 2014 for individual and small group plans included: Elimination of discrimination
based on health status, A prohibition on pre-existing
condition exclusions, Guaranteed issue and renewal
requirements, and Gradual elimination of annual
and lifetime caps on medical expenses
Significant investments in Medicaid incentivize states to expand eligibility to individuals and families living at or below 133% of the federal poverty level
Substantial federal subsidies and out-of-pocket limits to make coverage as affordable as possible for individuals whose annual incomes are at or below 400% of the federal poverty level
New mechanisms and payment methods to better coordinate chronic care for people with disabilities, development of standards for accessible diagnostic and other medical equipment, and inclusion of persons with disabilities in research and data collection
Large federal investments in prevention, education, and training for allied health professionals
Public Policy
Prohibits discrimination based on disabilities in programs run by federal government agencies such as schools, hospitals and nonprofit organizations receiving federal financial assistance
Prohibits discrimination in hiring, placement and promotions
Section 504 - Schools must provide a “free appropriate public education” regardless of nature or severity of disability
Important for students with brain injury because the regulations accompanying the law require school districts to provide a “free appropriate public education” regardless of the nature or severity of disability
While any student who has been found eligible for special education services is also considered covered under Section 504, this provision also covers students who may have a disability but are not eligible for special education services
Public Policy
Known as IDEA Addresses the intervention, special education,
and related services provided by states and public agencies which accept federal funding for children with disabilities in 14 specified categories, including TBI
Having a disability does not automatically qualify a student for special education services under the IDEA
The disability must result in the student’s needing additional or different services to participate in school
Known as IEP Key requirement of IDEA schools must
establish an Individualized Education Program
Describes the student's present academic performance and how the student's disabilities affect that performance
Specifies the special education and related services to be provided, and how often, as well as other required accommodations
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Public Policy
Known as ADA Prohibits discrimination in employment,
state and local government Mandates public accommodations in
commercial facilities, transportation and telecommunications
Goal is to keep Americans with disability in mainstream society
Known as OBRA Authorized the establishment of home – and
community – based Medicaid waivers This allows states to provide medical and
related services tailored to the unique needs of a particular population in the state
More than 8,200 persons are served under traumatic or acquired brain injury Medicaid waivers
Persons with brain injury may also qualify for aging and disabled, vocational, and other types of Medicaid waivers
Public Policy
Only federal legislation that specifically addresses TBI
The act authorized the National Institutes of Health to focus on these 3 areas:
1. Research – National Institute of Neurological Disorders and Stroke (NINDS) to make grants for basic research
2. Prevention – Authorize the Centers for Disease Control and Prevention (CDC) to study where and how people get injured and what happens to them afterward
3. Improved Services - U.S. Department of Health and Human Services to make grants to state government agencies and Protection and Advocacy organizations to improve access to services for people with brain injury and their families
Many of the federal laws support federal programs and joint federal-state programs which pay for services for persons with brain injury
Some states have enacted trust fund legislation for the same purpose
Support Groups
The Need for Support Groups Starting in the 1970s, and steadily
thereafter, mortality rates due to traumatic brain injury in the United States improved considerably
Two major contributors were vehicle-related safety improvements and improvements in trauma care
Collectively, these medical and societal enhancements resulted in mortality rates due to TBI dropping 20% from 1980 to 1994
As a result, fewer people were dying, and more people were surviving and living with brain injuries
The Need for Support Groups
More people survived their injuries, but there were few treatment guidelines to address the longer term needs
Despite the lack of clear treatment guidelines, persons with brain injuries surpassed the expectations of their physicians
Professionals, individuals with brain injuries and family members looked to each other to validate their experiences and identify resources
Families in particular had to assist in the recovery of the person with a brain injury, navigate service delivery systems, access insurance and public benefits, and identify community resources and supports
These circumstances culminated in the need for families, and individuals with brain injuries, to have a place to talk and share
The brain injury support group was thus born…
Support Groups Provide a forum to discuss difficulties/achievements with a
group of others who have common issues
Gain knowledge on how to navigate the health system, access insurance or public benefits
Social and psychological support for caregivers
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Support Group Types
A broad definition of a support group is “a gathering of people who share a common health interest or concern”
Support groups developed for caregivers, often family members of those injured, as well as for those who themselves were injured
For each of these groups the support group served unique functions and purposes
Support Groups: Caregivers
Families members are essential to their loved one’s recovery
They are often primary caregivers as well
Being a caregiver can leave individuals vulnerable to illness and distress
Support groups can be beneficial
Support Groups: Caregivers
Feeling confused and anxious about neurobehavioral sequelae
Having strong mixed feelings about the person with the injury
Feeling uncomfortable or trapped living with a stranger
Injury-related problems do not end soon after the survivor is discharged home
Disappointment in rehabilitation effectiveness
Failure to recognize the impact of injury on the whole family
Feelings of guilt have a detrimental impact
Loss of relationships, feeling isolated and alone
Neglecting one’s self
Feeling stressed and overwhelmed
Having difficulty remaining patient
Managing problems ineffectively
Blaming other people for causing or not solving problems
Worrying and focusing on the negative
Feeling frustrated and confused when presented with contradictory advice and opinions
Losing track of important documents
Not being comfortable or successful in asking for help
Avoiding direct and honest communications
Feeling uncomfortable talking to others about the injury
Feeling uncomfortable asking questions
Family issues after injury
Patient Factors
Impact on Family & Caregivers
Behavioral Impairments Which indirectly impacted psychological
distress via its: Impact on family functioning and Impact on participation impairments (work
and independent living skills)
Cognitive Impairments Which directly impacted psychological distress
in family caregivers
Social Impairments Which directly impacted psychological
distress in family caregivers
Impairments of the person with the injury impact caregiver distress
Impact on Family & Caregivers
Additional Factors
Emotional Supports: caregivers reported a perceived lack of emotional supports (e.g., preparing for the worst, discussing feelings about the loved one with someone having similarexperience, help getting over fears and doubts about the future, and being reassured that it is usual to have strong negative feelings about the loved one).
Quality of Life: caregivers reported a decline in their quality of life from pre‐injury levels or as compared to controls
Instrumental Supports: caregivers reported a perceived lack of instrumental supports (e.g., help from others in caring for loved one, getting enough rest or sleep, attending to one’s own needs, respite care)
Professional Supports: caregivers reported a perceived lack of professional supports (e.g., resources for loved one, resources for oneself )
Caregivers’ unmet emotional and social supports
Support Groups: Caregivers
Research has suggested that familial caregivers can adversely impact psychosocial outcomes for their loved ones
One area of interest was the finding of a strong relationship between the caregiver’s level of perceived social support and their loved one’s psychological outcomes
Lower levels of caregiver perceived social support related to higher levels of distress and lower levels of life satisfaction in their loved one
Conversely, higher levels of caregiver perceived social support related to lower levels of distress and higher levels of life satisfaction in their loved one
Caregivers are greatly impacted by the person’s injury and perceived social support of caregivers relates to the person’s outcomes after TBI.. So, ways to increase social supports for caregivers is important
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Support Groups: Caregivers
Support group benefits for caregivers include: Reduction of the
pressures and burdens of caregiving
Reductions in anger responses and depressive symptoms
Increased social support and satisfaction
In a study of caregivers of individuals with dementia, factors of the support group correlating to more positive outcomes included:
Use of a theoretical model by group facilitators
Longer length of the sessions (e.g., 8 or more weeks, or a total of 16 or more hours)
Group sizes of 6-10 caregivers
Use of a group manual, providing greater opportunity to review information
Use of interdisciplinary facilitators versus one discipline
Higher ratios of females in the group
Moderate severity of dementia of the caregiver’s loved one (versus low or high)
Support Groups: Individuals Living with a Brain Injury Hope Common ground Information Altruistic nature Development of Social Skills Peer learning experience Interpersonal skill training Cohesiveness Catharsis Existential factors Advocacy skills
Legal and Ethical IssuesChapter 14
Legal Rights
The individual with a brain injury has the same legal rights as anyone
A legal representative may exercise those rights if the individual with the brain injury is unable to do so
Patient’s Bill of Rights
Written guarantee of basic rights for individuals in treatment programs
Staff are accountable to adhere to these rights
Violation of rights could be grounds for a lawsuit
Treated with respect, consideration and dignity
Receive and send unopened mail
Manage financial affairs or given an account of transactions
Unaccompanied access to phone for emergency/personal crisis
Make contacts in community to achieve highest level of independence
Definition Examples
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Seclusion and Restraint
Used only as a measure of last resort: less restrictive measures are unsuccessful or patient/others are in imminent danger
Inappropriate use violates Constitutional rights
Every U.S. citizen is guaranteed constitutional rights regardless of ability/disability
Never allowed for shortcomings of treatment program (e.g. short staffed, poor training or lack of treatment programming)
Can be dangerous to patients and staff
Monitor physical and psychological status of patient
Medically Prescribed Restraints
Prescribed by a physician
Vests – prevent falling out of bed
Helmets – patients prone to seizures
Lap belts or lap trays
Can be managed by patient or removed by patient’s direction
Accreditation Standards Addresses safety and quality of care
Done voluntarily, for state licensing or federal certification
Joint Commission (JC) and Commission on Accreditation of Rehabilitation Facilities (CARF)
Can vary by setting
Principles of Ethical Standards
BeneficenceTruthfulness
Compliance
ConfidentialityLoyalty
NonDiscrimination
Respect Competence
Autonomy
Principles of Ethical Standards
Competency or Capacity
Mental ability to understand the nature and effect of one’s decisions and acts
Only a court may determine if an individual is legally incompetent
If person is legally incompetent then the court may appoint a representative to make decisions
Guardianship
A legally-enforceable arrangement in which the guardian has the legal right and duty to care for another (the ward)
“Natural” guardianship dissolves when the age of adulthood is reached; even for those with a brain injury unless legal action is taken
The ward does not lose basic rights Does not necessarily extinguish legal
rights of ward – right to vote or to marry
Guardian of the Person Manages and makes decisions
about personal affairs (e.g. food, shelter, clothing, medical care, education and rehabilitation)
Guardian of the Estate Manages only financial affairs and
property of the ward Plenary Guardianship Manages both the personal needs
and property of the ward
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Things to Know About Guardianship Who the guardian is
Extent of power/duties of guardian Should be clearly reflected in the probate court
paperwork
How to reach the guardian
Who to notify if the guardian is not performing as expected
Power of Attorney
A document where a competent person appoints other person to act for him/her in legal and financial issues
Can be immediate or when something happens
Durable means it is not changed when the person becomes disabled or incompetent
Confidentiality
Health Insurance Portability and Accountability Act (HIPAA) was enacted in 1996
Regulations developed to protect individually identifiable health information, known as protected health information (PHI), came into effect in April 2003
Confidentiality
Identifying health information which can be linked to a person
Protected Health Information Cannot not be used or
disclosed without a specific authorization other than for purposes of Treatment Payment or Health care operations
Confidentiality
Patient’s right to consent to care after provider fully discloses all risks and facts to make informed decision
Patient has the right to an informed decision, whether legally competent or not
Informed Consent Privilege
The right of a patient to prevent disclosure of health care information unless consent is given
State law may override patient privilege without consent Reporting communicable
diseases, gunshot wounds, child/elder abuse
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Abuse, Neglect & Exploitation
Abuse is the willful infliction of injury, unreasonable confinement, intimidation, or punishment with resulting physical harm, pain or mental anguish
This also includes the deprivation by an individual, including a caretaker, of goods or services that are necessary to attain or maintain physical, mental, and psychosocial wellbeing
Abuse, Neglect & Exploitation
Neglect is usually a failure to provide for the basic needs of a dependent individual
Exploitation is the use of a dependent individual’s property illegally or without the consent of the individual
Exploitation includes the expenditure of funds
An advocate can be an individual or organization who serves on behalf of a patient
Can be a formal legal or informal arrangement
Can help with legal/ethical issues, or funding or services
Patient can have an advocate without reprisal
Americans with Disabilities Act (ADA)
Enacted in 1990 to prohibit discrimination of those with disabilities
ADA defines disability as: A person who has a physical or mental
impairment that substantially limits one or more major life activities (a major life activity includes any activity that an average person can perform with little or no difficulty such as: walking, breathing, seeing, hearing, speaking, learning and working);
A person who has a history or record of such an impairment; or a person who is perceived by others as having such impairment
ADA – Title I: Employment
Prohibits discrimination in recruitment, hiring, promotions, training, pay, social activities and other privileges of employment
Employer must make reasonable accommodations as long as it doesn’t constitute an undue hardship
ADA – Title II: State & Local Government
Covers state and local government services (e.g. city buses and public rail transit)
Give all individuals an equal opportunity to benefit from all programs, services and activities
Provide services in the most integrated setting
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ADA – Title III: Public Accommodations
All businesses and nonprofit entities who provide service to the public
Must comply with basic nondiscrimination requirements that prohibit exclusion, segregation and unequal treatment
Private clubs, religious organizations and private residences are exempt
ADA – Title IV: Telecommunications
Addresses telephone and TV access for those with hearing and speech disabilities
Use of devices for the deaf or teletypewriters
Closed captioning of federally-funded public service announcements
ADA – Title V: Misc. Provisions
Addresses relationship of the law to other laws and jurisdictions
Includes information on insurance providers, attorneys’ fees and conditions not defined as disabilities
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