Implications of Pandemic Influenza for Implications of Pandemic Influenza forImplications of Pandemic Influenza for People with Disabilities People with DisabilitiesPeople with Disabilities Vincent Campbell, Ph.D. Associate Director for Science Division of Human Development and Disability Centers for Disease Control and Prevention Centers for Disease Control and PreventionCenters for Disease Control and Prevention National Center National CenterNational Center on onon Birth BirthBirth Defects DefectsDefects and Developmental Disabilities and Developmental Disabilitiesand Developmental Disabilities TM Acknowledgments AcknowledgmentsAcknowledgments • Jamylle Gilyard, MPH – Division of Human Development and Disability, NCBDDD • Lisa Sinclair, MPH – Disability and HealthTeam; NCBDDD • Tom Sternberg, MS – Medical StaffingAssociates & Division of Human Developmentand Disability, NCBDDD TM Outline OutlineOutline • What are disabilities? • How many people with disabilities? • Characteristics of populations with disability • Why may people with disabilities at greater vulnerabilityduring an influenza pandemic? • Legislative and administrative foundations for includingprovisions for people with disabilities in all hazardspreparedness, including planning for pandemic influenza • Status • Major issues, concerns, and current recommendationsfor preparedness • General recommendations for preparedness forpandemic influenza with regard to people withdisabilities TM Disability DisabilityDisability “An umbrella term for impairments, activitylimitations and participation restrictions. It denotes the negative aspects of theinteraction between an individual (with ahealth condition) and that individual’scontextual factors (environmental andpersonal factors).” – World Health Organization. (2001). International classification of functioning, disability and health. Geneva: WHO; p. 213. i.e., Not disease specific TM Focus FocusFocus • Functional issues that may put people with disabilities at additional risk in the event of pandemic influenza • Not on potential drug interactions or contraindications related to conditions underlying the functional limitations of people with disabilities TM Activities and Participation Activities and ParticipationActivities and Participation • Learning and understanding • Seeing • Hearing • Communicating • Mobility MISSING -> MENTAL ILLNESS – moving – moving around – moving things • Self-care • Domestic life (Instrumental activities of daily living) • Interpersonal interactions and relationships • Major life areas (education, work and economic life) TM Disability and Em Disability and EmDisability and Emergency Preparedness and ergency Preparedness andergency Preparedness and Pandemic Influenza Planning and Response Pandemic Influenza Planning and ResponsePandemic Influenza Planning and Response • Focus is on functioning and environment • Can we identify and anticipate features ofpeople with disabilities (impairments andactivity limitations) and environmental factorsthat can yield desired outcomes of emergencypreparedness activities (including pandemicinfluenza) • Mitigation • Response • Recovery TM Estimating Size of the Population Estimating Size of the PopulationEstimating Size of the Population • Number varies depending on the survey used, the sampling frame, the survey mode, the questions asked, even skip patterns employed • Usually limited to noninstitutionalized civilian population • Estimates vary but generally 15% -20% of the population and 40 -50 million people • Estimates vary by geographic location, race, sex, age • Disparities exist between people with and without disabilities on health status, income, education, etc. TM Number (000) and Percentage of USA Population Number (000) and Percentage of USA PopulationNumber (000) and Percentage of USA Population 15 years and older, SIPP, 2002 15 years and older, SIPP, 200215 years and older, SIPP, 2002 All Dis All DisAll Dis a aa bilities bilitiesbilities Severe SevereSevere Needs NeedsNeeds Assistance AssistanceAssistance N % N % N % All ages 51,235 18.1% 32,532 11.5% 10,746 3.8% < 15 yrs 5,111 8.4% 2,044 3.4% 179 0.3% 15 -24 yrs 4,128 10.5% 1,911 4.8% 479 1.2% 25 -44 yrs 9,230 11.1% 6,023 7.3% 1,659 2.0% 45 -54 yrs 7,705 19.4% 5,021 12.6% 1,506 3.8% 55 -64 yrs 7,415 28.1% 5,090 19.3% 1,421 5.4% 65 -69 yrs 3,633 38.4% 2,400 25.4% 780 8.2% 70 -74 yrs 3,984 46.9% 2,554 30.1% 999 11.8% 75 – 79 yrs 3,895 53.9% 2,609 36.1% 1,160 16.0% 80 yrs + 6,134 71.7% 4,880 57.0% 2,563 30.0% TM TM Percentage of the Population with Disability by Severity and Need for Assistance, by Age, SIPP, 2002 0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100% < 15 yrs 15 - 24 yrs 25 - 44 yrs 45 - 54 yrs 55 - 64 yrs 65 - 69 yrs 70 - 74 yrs 75 - 79 yrs 80 yrs + All Disabilities % Severe % Needs Assistance % TM Percentage of the Population with Disability by Severity and Need for Assistance, by Age, SIPP, 2002 0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100% < 15 yrs 15 - 24 yrs 25 - 44 yrs 45 - 54 yrs 55 - 64 yrs 65 - 69 yrs 70 - 74 yrs 75 - 79 yrs 80 yrs + All Disabilities % Severe % Needs Assistance % Noninstitutional NoninstitutionalNoninstitutional Population with Disability, Age Population with Disability, AgePopulation with Disability, Age >= 15 Years, by Race/Ethnicity, Severity and >= 15 Years, by Race/Ethnicity, Severity and>= 15 Years, by Race/Ethnicity, Severity and Need for Personal Assistance Need for Personal AssistanceNeed for Personal Assistance Needs All Disabilities Severe Assistance N(000) % N (000) % N (000) % White (Non-Hispanic) 37,437 19.0 23,227 11.8 7,679 3.9 Black 7,155 19.8 5,054 14.0 1,708 4.7 Asian/Pacific Islander 1,303 11.5 817 7.2 286 2.5 Hispanic (of any race) 5,209 13.8 3,335 8.8 1,095 2.9 Total (includes Native Americans, Multiple Race/Eth. And Unknown) 51,235 18.1 32,532 11.5 10,746 3.8 Source: Survey of Income and Program Participation, 2002; US Census Bureau; http://www.census.gov/hhes/www/disability/sipp/disab02/ds02t1.html TM Percentage of Noninstitutional Population Percentage of Noninstitutional PopulationPercentage of Noninstitutional Population Living Below Poverty Level, by Age Group Living Below Poverty Level, by Age GroupLiving Below Poverty Level, by Age Group and Disability Status and Disability Statusand Disability Status N (000) % N (000) % 5 – 15 years 781 28.5 6,951 16.9 16 – 20 years 378 26.8 3,431 18.8 21 – 64 years 5,673 25.4 13,799 9.2 >= 65 years 2,001 13.7 1,516 7.2 41,0515 years and older (Total): 21.5 229,737 11.2 Source: American Community Survey, 2006; Table B18030. Disability Status by Sex by Age by Poverty Status for the Civilian Noninstitutionalized Population Age >= 5 Years TM Estimated Population and Percentages with Estimated Population and Percentages withEstimated Population and Percentages with Self-Care Disability, by Age Group – Self-Care Disability, by Age Group –Self-Care Disability, by Age Group – U UUnited States nited Statesnited States N (Noninstitutional) % Pop. N Includes institutional 5 – 15 years 388,277 0.9 393,835 16 – 20 years 155,434 0.7 161,256 21 – 64 years 4,032,058 2.3 4,285,421 65 – 74 years 1,132,102 6.1 1,309,994 >=75 years 2,587,142 15.3 3,709,034 5 years and older 8,295,013 3.0 9,859,540 Source: American Community Survey, 2006, Public Use Microdata Samples, TM Estimated Population and Percentages with Self-Care Disability, Estimated Population and Percentages with Self Estimated Population and Percentages with SelfEstimated Population and Percentages with Self- -- Care Disability, Care Disability,Care Disability, by Age Group and Residential Status by Age Group and Residential Statusby Age Group and Residential Statusby Age Group and Residential Status 2 People Living Together (Pop) – Living Alone (Pop) or both w SC Dis (1 may be a child) Age (yrs) N % N % 5-17 0 - 27,069 1.0% 18-44 126,435 1.0% 281,898 1.2% 45-64 341,382 4.8% 1,075,680 3.5% >=65 291,433 9.1% 1,483,033 7.9% >=5 759,250 3.4% 2,867,680 3.8% Source: American Community Survey, 2006, Public Use Microdata Samples, US Census Bureau TM Estimated Population and Percentages with Going Estimated Population and Percentages with GoingEstimated Population and Percentages with Going- -- OutsideOutside- -- Alone Disability, by Age Group and Residential Status Alone Disability, by Age Group and Residential StatusAlone Disability, by Age Group and Residential Status 2 People* Living Together, 1 2 Adults Living Together, At with G-O-A Disability Least 1 Has G-A-O or SC Disability (1 could be a child or other person) Age (yrs) N % Age (yrs) N % 5-17 5-17 18-44 196,890 1.6 18-44 548,581 2.4 45-64 438,614 6.1 45-64 1,760,331 5.7 >=65 444,824 14.0 >=65 2,695,619 14.3 >=5 1,080,328 4.8 >=5 5,004,531 6.9 Source: American Community Survey, 2006, Public Use Microdata Samples, US Census Bureau TM Community-Based Services Community-Based ServicesCommunity-Based Services Medicaid provides two programs: • Personal Care Services benefit – 683,000 recipients • Home and Community-Based Service waiver (person requires institutional level of care butreceives in home or other community setting) – 352,000 recipients -Kitchener, Ng, and Harrington, 2006 TM Group Quarters for People with Disabilities Group Quarters for People with DisabilitiesGroup Quarters for People with Disabilities From 2000 Census enumeration of the population – Institutionalized: • Nursing homes • Hospitals, residential schools for people w/ disabilities • Residential centers for emotionally disturbed children – Noninstitutionalized: 1,720,500 234,241 12,725 • Group homes 454,055 TM What about People with a Disability and What about People with a Disability andWhat about People with a Disability and Pandemic Influenza? Pandemic Influenza?Pandemic Influenza? • We have no data on how people with disabilities havebeen affected by previous outbreaks of pandemicinfluenza (any more than we know how they wereaffected by specific natural events like earthquakes orhurricanes) – we can speculate • In general, we have no surveillance that capturesdata on functional limitations and emergencies – after Katrina, 38% of residents in Houston shelter reportedthat they did not evacuate New Orleans duringKatrina because they or someone they were caringfor were physically unable to leave -Survey conducted by Kaiser Foundation, Harvard & Washington Post, 2005 TM Federal Legislation on Disability Federal Legislation on DisabilityFederal Legislation on Disability • Rehabilitation Act of 1973, as amended • Americans with Disabilities Act of 1990 • Fair Housing Act of 1968, as amended • Architectural Barriers Act of 1968 • Communications Act of 1934, as amended • Individuals with Disabilities Education Act (IDEA) of 1975, as amended TM Exec. Order 13347 - Exec. Order 13347 -Exec. Order 13347 - I IIndividuals with Disabilities ndividuals with Disabilitiesndividuals with Disabilitiesin Emergency Preparedness, July 22, 2004 in Emergency Preparedness, July 22, 2004in Emergency Preparedness, July 22, 2004 Focuses on disasters, including earthquakes, tornadoes, fires, floods, hurricanes, and acts of terrorism. – Mandates consideration in emergency planning ofthe needs of federal employees; employees of state, local, territorial and tribal governments; their servicerecipients; and the general public – Establishes an interagency coordinating committee, chaired by DHS to integrate planning for people withdisabilities in emergency preparedness. – Annual report to the president on best practices, etc. TM Pandemic and All-Hazards Preparedness Pandemic and All-Hazards PreparednessPandemic and All-Hazards Preparedness Act (PAHPA), 2007 Act (PAHPA), 2007Act (PAHPA), 2007 Establishes a new Section 2814 of the PHS Act to address the needs of at-risk individuals, defined as children, pregnant women, seniorcitizens and other individuals who have specialneeds in the event of a public healthemergency, as determined by the Secretary. Requires the Secretary to take the needs of at- risk individuals into account in managingseveral preparedness programs, including theSNS and preparedness grants to states. TM TM HHS and CDC PI PlanningHHS and CDC PI Planning TM HHS and CDC PI PlanningHHS and CDC PI Planning CDC Resources to Grantees CDC Resources to GranteesCDC Resources to Grantees • 50 States • 3 Municipalities • 1 Commonwealth • 7 territories • No tribes • $400 million total distribution (Phase I (1/2006), Phase II (6/2006), 2007 allocations, FY 2007 (8/2007) -http://www.pandemicflu.gov/news/allocation.html TM CDC Guidance to Grantees CDC Guidance to GranteesCDC Guidance to Grantees • Address the needs of vulnerable/special populations (references Public Health Workbook to Define, Locate and Reach Special, Vulnerable and At-Risk Populations in an Emergency at www.bt.cdc.gov/workbook • Assess and map local community; identify and build social networks; and develop community outreach information networks, pre-event, to a) define, locate and reach special, at-risk and vulnerable populations and b) maximize capacity to effectively disseminate public information during a pandemic. -www.bt.cdc.gov/planning/coopagreement/pdf/phase2-panflu-guidance.pdf TM PH Activities and Relationship PH Activities and RelationshipPH Activities and Relationshipto People with Disabilities to People with Disabilitiesto People with Disabilities Key Pandemic Response Activities: – Surveillance, investigation, and protective health measures – Vaccines and antiviral drugs – Health care and emergency response – Communications and outreach -http://www.cdc.gov/flu/pandemic/cdcplan.htm TM Key Pandemic Respon Key Pandemic ResponKey Pandemic Response Elements and se Elements andse Elements and Disability Considerations (HHS Plan) Disability Considerations (HHS Plan)Disability Considerations (HHS Plan) Surveillance, investigation, and protective health measures Implement public health measures to limit the spread of infection (e.g., canceling public gatherings) as well as individual measures to decrease the risk of acquiring of spreading infection (e.g., personal hygiene, isolation of ill persons); closure of schools; non-essential personnel stay home CONSIDERATION FOR PWD -CONTINUTY OF SERVICES TM Vaccines and antivirals Vaccines and antiviralsVaccines and antivirals (1) Consider administration of pre-pandemic stockpiled vaccine, to pre-defined groups, critical to the pandemic response (3) Allocate and administer pandemic vaccine to pre-defined groups CONSIDERATIONS FOR PWD – TRIAGE, CONTINUTY OF SERVICES TM Communications and outreach Communications and outreachCommunications and outreach Public education and information campaign to 1) communicate measures the public canimplement to minimize risk and decreasethe spread of infection; 2) provide honest, accurate understandableand timely information; and 3) counter confusion and panic. CONSIDERATION FOR PWD – ACCESSIBLE COMMUNICATION TM CDC Pandemic OPLAN – CDC Pandemic OPLAN –CDC Pandemic OPLAN – A AAntivirals ntiviralsntivirals July 11, 2007 July 11, 2007July 11, 2007 • Annex F, Appendix 1 – Use of Antiviral Drugs • C.1. ‘Depending on antiviral supplies prioritization of antiviral agent use may be necessary, i.e., treat those at highest risk of severe illness and death and to preserve the delivery of healthcare other essential critical services through early treatment of targeted persons. • C.2. “After a vaccine becomes available, antiviral drugs may be used to protect persons who have an inadequate vaccine response (e.g., the elderly and those with underlying immunosuppressive disease) . . . TM CDC Pandemic OPLAN - CDC Pandemic OPLAN -CDC Pandemic OPLAN - V VVaccines accinesaccines 4.b.4. Guidance for Special Needs Populations: • Ensure information is available in local languages • Accommodate personnel without transportation and those requiring specialized transportation • Accommodate the needs of people with physical disabilities. • Plan for vaccinating homebound persons • Ensure communication with special needs populations. TM HHS Pandemic Influenza Plan – HHS Pandemic Influenza Plan –HHS Pandemic Influenza Plan – P PPriority Groups riority Groupsriority Groups November 2005 November 2005November 2005 1. Healthcare workers w/ direct pt. contact (includes nursinghomes, SNFs. . . home care . . .) 2. People 2-64 years with medical condition for whomvaccination is recommended and people 6-23 months and65 and older regardless of medical status (excluding NHresidents and severely immunocompromised people whoare not expected to respond well) 3. Critical infrastructure staff 4. Public health emergency response workers 5. People in SNFs – assumption is that the risk is lower 6. Severely immunocompromised people 7. Children under 6 months of age Appendix D: Recommendations for prioritization of … vaccine and … antiviral drug use TM Accessibility of Messages Accessibility of MessagesAccessibility of Messages NCHM has developed messages for people with hearing loss during emergencies http://emergency.cdc.gov/disasters/hurricanes/psa/video /psa-preparing-for-hurricane_asl.wmv – Exists as on web site; URL has been disseminated informally to HL organizations (e.g., Nat. Assn. of the Deaf), related blogs and listservs. – Not to local TV stations, etc. – PI messaging to be developed TM So . . . Where Do We Stand? So . . . Where Do We Stand?So . . . Where Do We Stand? • With regard to PI preparedness . . . ? • Nationwide Plan Review Phase 2 Report, 6/16/2006: “The CRCL Review revealed major fragmentation, inconsistencies, and critical gaps throughout the plans. Few plans demonstrate in-depth planning and proactive thinking in preparing to meet the needs of people with disabilities before, during, and after emergencies. Most plans delegate critical responsibilities to third parties or other governmental entities without adequate coordination, oversight, or assurance of resources. Most plans contain no indication that a delegated function will be executed in a timely and effective manner” (p. 45). TM Response Issues and Concerns Regarding Response Issues and Concerns RegardingResponse Issues and Concerns RegardingPI Planning for People with Disabilities PI Planning for People with DisabilitiesPI Planning for People with Disabilities • National planning has included people with disabilities andtheir representatives • If assessments of disaster preparedness are valid indicators territorial, tribal and local planning and readiness are inadequate. • Accessible messages have been developed for people with hearing loss with access to a computer and internet but noevidence of messaging for people with cognitive limitations • Social distancing measures may put homebound people with disabilities and those who rely on paid caregivers at risk for disrupted care and support. • There is concern among advocates for people with disabilitythat they will be devalued (it’s happened in the past) and given low priority for vaccines and antiviral medications. TM Concerns/Issues Concerns/IssuesConcerns/Issues • Lack of adequate surveillance systems • Lack of consistent guidance to grantees • Lack of involvement of people with disabilities in the planning and preparations for pandemic influenza at the local level • Lack of tested messaging and communications TM Recommendations RecommendationsRecommendations • Disability questions routinely included in all datacollection related to pandemic influenza (andpreparedness) activities • Involvement of people with disabilities, advocates and caregivers to assess the adequacy of planning and response • Specific guidance to states, localities, territories andtribes concerning: – involvement of people with disabilities and theirrepresentatives in pandemic influenza planning – continuity of services to homebound people withdisabilities. – Alternative/accessible communications to peoplewith disabilities and other hard-to-reach populations TM Recommendations RecommendationsRecommendations • Involvement of people with disabilities and their representatives, and inclusion of disability-related scenarios in PI exercises. • Continuing evaluation and feedback to state, territorial, local, and tribal PI planners on performance with regard to their preparations for ALL risk populations. TM TM Thank you vcampbell@cdc.gov TM Thank you vcampbell@cdc.gov Other Considerations for People with Disabilities Other Considerations for People with DisabilitiesOther Considerations for People with Disabilities • Residence in ‘Group Quarters’ – Nursing homes – Group homes – Institutions for subpopulations • Receiving care from others • Many assistive devices that are required toperform activities and that increaseindependence require maintenance andworkers in this area may not come to work inthe event of PI TM