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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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