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Transcript of Patient Advocacy: Issues & Answers for CF © Presented by This Web cast is supported by an...
Patient Advocacy:Issues & Answers for CF©
Presented by
This Web cast is supported by an unrestricted educational grant from Genentech, Inc.
Patient Advocacy: Patient Advocacy: Issues & Answers for CFIssues & Answers for CF©©
Beth Sufian, J.D.Beth Sufian, J.D.
Sufian & Passamano, L.L.P.Sufian & Passamano, L.L.P.
&&
Suzanne Cumming, R.N., B.S.N.Suzanne Cumming, R.N., B.S.N.
Baylor Adult CF Care CenterBaylor Adult CF Care Center
Houston, TexasHouston, Texas
If You Do Not Know Your If You Do Not Know Your Legal Rights. . .Legal Rights. . .
Can limit access to care whichImpacts health
Health Health InsuranceInsurance
Available at Available at CF Care Center or CF Care Center or
www.cff.orgwww.cff.org
Health Insurance CoverageHealth Insurance Coverage
Best way is as a benefit of employment
85% of people in the U.S. have health insurance through work
Employer-based policy cannot exclude person because of health
Low wage jobs often offer insuranceFederal government
Key Insurance IssuesKey Insurance IssuesHealth Insurance Portability
Accountability Act (HIPAA) Applies to group policiesTime limit on pre-existing conditionCreditable Coverage
No pre-existing condition wait if there has been less than a 63 day break in coverage
HIPAA - HIPAA - Group CoverageGroup CoverageGroup policy for businesses of 2-50
employees regardless of healthMust be a legitimate businessEmployees can be relatedIf a person has a medical condition
insurance company can charge higher premiums
Can raise rates on second and following years
Private Health Insurance Private Health Insurance
Know your policyHighlight CF related sections, e.g.,
prescription drug coverage
Policy may change each yearKeep good records, e.g., clinic visits,
treatments, drugs Keep and review bills & formsKeep notes of conversations
with insurance company
Appeal A Denial of CoverageAppeal A Denial of Coverage
Timely appeal Find out why coverage deniedFind out how to appeal
Documentation from CF doctor of medical necessity
Pick battlesUsually have two chances
COBRA - COBRA - Consolidated Omnibus Consolidated Omnibus Budget Reconciliation ActBudget Reconciliation Act
Extension of health insurance Job termination or layoff - 18 months Death of covered employee – 36 monthsDivorce or separation - 36 monthsBecome eligible for SSDI (Social Security
Disability Insurance) - 29 monthsChild reaches limiting age - 36 months
COBRA ApplicationCOBRA Application
Employers with 20 or more employeesFormer employee required to pay full
monthly premium plus 2%Save money for COBRAIf employer cancels insurance for all
employees, then COBRA coverage ends
Transition to AdulthoodTransition to Adulthood
Changes from dependent on parent’s policy to having own insurance
Dependents will reach limiting age on policyLimiting age – age on policy when
coverage of dependent ends
COBRA extension for 36 months when child reaches limiting age
Continuation of Coverage – Continuation of Coverage – State LawState LawRequires continuation of dependants
insurance after reaching a policy’s limiting age
Child must be incapable of self-support due to a physical or mental condition
Have form completed by CF doctor
Continuation of CoverageContinuation of Coverage
Assess ability to self support before end coverage on parents’ policy
It may be better to start by working part-time to see if can work AND maintain health
CANNOT go back on parents’ health insurance if young adult discovers he/she is unable to support self
Continuation of CoverageContinuation of CoverageStates that do not have a law for
continuation of coverage:AlabamaAlaskaDCKansasMaineOklahomaOregon
CF Care Center HelpCF Care Center Help
Tell your CF center if you are having trouble with insurance
May know of other programsCan provide. . .
Information for continuationof coverage
Statements of medical necessity for coverage of medical treatments and drugs
Government Government ProgramsPrograms
Government ProgramsGovernment Programs
May be programs that provide benefits to people with CF
Having a diagnosis of CF does NOT automatically qualify a person for benefits
SSI - SSI - Supplemental Security IncomeSupplemental Security Income
Must meet both low income and medical requirements
Receive monthly benefitSome states add money to federal
benefit so amounts may differ by state
Eligible for Medicaid coverage upon approval of application
Low Income RequirementsLow Income Requirements
Under age 18. . .Parents must meet low income guidelines
Over age 18. . .If living with someone (e.g., parent)
household income of everyone will be considered UNLESS there is a written agreement for SSI recipient to pay their portion of household expenses
SSDI - SSDI - Social Security Disability Social Security Disability IncomeIncome
Work requirementsEmployed & paid Social Security taxes
Medical requirementsMonthly benefit based on amount of
Social Security taxes paid Qualify for Medicare coverage 29
months after considered disabledNeed COBRA to extend coverage
Medical Requirements – Medical Requirements – within Last 12 Monthswithin Last 12 Months
Low pulmonary function (PFT)FEV1 based on height
Hospitalizations - 3 in last 12 monthsTreatment of respiratory infections -
IV or Inhaled antibiotics – at least once every 6 months with in the last year
Medical Records EvidenceMedical Records Evidence
12 month records of. . .PFT reports (lung function)Sputum culture reportsClinic notesLetter from doctorDischarge summaries
if hospitalized
Social Security ApplicationSocial Security Application
On-line or phone – www.ssa.org or 800-772-1213
Letter from doctorKeep copies of records & applicationHave 60 days from receipt of denial
to appeal
CF Care Center HelpCF Care Center Help
Give accurate information about your health status. . .Medical record MUST reflect health status
Center assistance. . . How to get startedAssessment of meeting
medical requirementsGetting medical record copiesLetter from doctor
EducationEducation
Available at Available at CF Care Center or CF Care Center or
www.cff.orgwww.cff.org
EducationEducation
Key to future employment opportunities
Important regardless of disease severity
Laws to help child get appropriate education without jeopardizing health
IDEA - IDEA - Individuals with Individuals with Disabilities Education ActDisabilities Education Act
Applies to public primary and secondary schools
All children have the right to an appropriate education
School must identify special educational needs of studentParent can request assessment
IEP - IEP - Individual Education PlanIndividual Education Plan
Letter from doctor explaining CF and medical needs
Right to have a mediation or fair hearing if requests are denied
IEP - CF IssuesIEP - CF Issues
Potential changes to include in plan, e.g., modifications. . .Taking medications at schoolProviding school work &/or
possible instructionArriving later than others Doing treatments during school dayNot being outdoors in extreme heat
or cold
Rehabilitation Act of 1973, Rehabilitation Act of 1973, Section 504Section 504
Students attending any school that receives federal funds are protected from discrimination
Requires plan for modificationsGives same protections as IDEA
Vocational Rehabilitation ActVocational Rehabilitation Act
Assists with job placementMay provide funding for state or
community college/university Can appeal if denied servicesVocational Rehab services in
major cities
CF Care Center HelpCF Care Center Help
CF center can. . .Provide documentation of student’s needsEducate schools &/or vocational rehab
services about CFSpeak with school about CF
and importance of modificationsProvide letter addressing
medical necessity of modifications
EmploymentEmployment
Available at Available at CF Care Center or CF Care Center or
www.cff.orgwww.cff.org
Employment Laws Protecting Employment Laws Protecting Employees with DisabilitiesEmployees with Disabilities
Rehabilitation Act of 1973 – applies to federal employees or employers who receive federal funds
Americans with Disabilities Act (ADA) – applies to employers with 15 or more employees
Protections Under ADAProtections Under ADA
No pre-employment medical questionsTelling CF diagnosis is optionalCannot be fired simply for having CFReasonable accommodations
e.g., later start time, no smoking, eating at desk, etc.
Family & Medical Leave Act Family & Medical Leave Act (FMLA)(FMLA)
Employer has 50 or more employees 12 weeks unpaid leave to care for
self, child, parents or spouse Must have worked for 1 yearMust have worked a minimum of
1250 hours in last 12 months
Employment ChoicesEmployment Choices
Guiding principals for employment:Protect access to health insurance
through employment Chose employers covered by civil
rights and employment laws
Employment ChoicesEmployment Choices
Guiding principals for career or employment:Physical activity requirementsRisk of infectionWork time, flex vs. structuredLocation of work,
i.e. indoors vs. outdoorsFlexible to working at home or going
part-time
CF Care Center HelpCF Care Center Help
Discuss with CF care team. . .Career optionsPotential employment opportunitiesPossible health concerns related to job Discuss issues related to ability to work
Presented by
This Web cast is supported by an unrestricted educational grant from Genentech, Inc.
Patient Advocacy:Issues & Answers for CF©
Questions & Answers
ResourcesResourcesCF Care CenterCF Legal Information Hotline –
800-622-0385 800-622-0385 oror [email protected] [email protected] Foundation – www.cff.org or
800 FIGHT CFCF Services Pharmacy, Inc. –
www.cfservicespharmacy.com or 800-541-4959
ResourcesResourcesFederal Government - www.firstgov.gov
or 1-800-FED-INFO Social SecurityMedicareCOBRAHIPAAAmericans with Disabilities ActU.S. Department of EducationState insurance commissioners
CF Legal CF Legal Information Hotline Information Hotline
800-622-0385 or 800-622-0385 or [email protected]@cfserv.com
Beth Sufian, J.D.Beth Sufian, J.D.
Sponsored by CF Services Sponsored by CF Services Pharmacy, Inc.Pharmacy, Inc.
www.cfservicespharmacy.comwww.cfservicespharmacy.com
Learn More – www.cff.orgLearn More – www.cff.org
Learn More – www.cff.orgLearn More – www.cff.org
Presented by
This Web cast is supported by an unrestricted educational grant from Genentech, Inc.
Patient Advocacy:Issues & Answers for CF©
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