spinal cord injury in florida responses from the spinal cord injury (sci) community • access to...

Strategic Plan 2010–2015

Spinal Cord Injury in Florida

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IntroductionI recognize and sincerely thank the staff ofWellFlorida Council for their professionalismand hard work in conducting statewide surveyson the current state of spinal cord injury (SCI)programs, services and initiatives. WellFloridahas been meticulous in their efforts to compileand analyze survey results and tireless in theirefforts to conduct comprehensive in-personneeds and resource assessments with SCIstakeholders across the state. This data, alongwith comments from key SCI stakeholders, arecrucial elements in developing the buildingblocks necessary in the advancement ofrecommendations for the SCI long-termstrategic plan.

The FAAST Spinal Cord Injury Resource CenterAdvisory Committee fulfilled a critical role aswell by serving as advisors, in conjunction withadministrators with the Brain and Spinal CordInjury Program and key stakeholders. This groupcame together as partners to collaborate on thedevelopment of recommendations for astatewide strategic plan to address the long-term needs of individuals with SCI.

Florida has one of the highest proportions ofindividuals with disabilities inclusive ofindividuals with SCI, and that demographictrend is expected to continue into the future.These population factors make it imperative for

officials with the Florida Department of Health,Brain and Spinal Cord Injury Program to plan sothat our state is adequately prepared to meetthe needs of individuals with SCI in the future.The adoption of recommendations containedwithin this report will assist Florida inaddressing some of the most pressing needsaffecting individuals with SCI and their families,both now and for decades to come. In additionto a responsible, long-term strategic plan,sufficient funding and the collaboration of keystakeholders are necessary to accomplish theobjectives set forth in this report.

I trust that this report—which is based onverifiable data and statistical analyses—and therecommended goals, objectives, and actionsteps will help guide the Governor, theLegislature, state officials and SCI partners asthey join forces to realize the vision of well-coordinated services for individuals with SCI and their families who reside in the great Stateof Florida.

Steve HowellsExecutive DirectorFlorida Alliance for Assistive Services andTechnology, Inc.

FAAST

The Florida Department of Health Brain and Spinal Cord Injury Program (BSCIP) and its partners,the Florida Alliance for Assistive Services and Technology, Inc. (FAAST), and the FAAST SpinalCord Injury Resource Center (FSCIRC) and its Advisory Committee have come together to conductFlorida’s first comprehensive needs and resources assessment of individuals with spinal cord injury(SCI) and to develop a five-year strategic plan for SCI in Florida.

For more information, please contact FAAST:

888-788-9216

www.FAAST.org

About the project

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Responses from the Spinal Cord Injury (SCI) Community

• Access to services that promote independence (e.g., personal care and transportation)

• Financial burden

• Lack of qualified, knowledgeable SCI providers

• Decreased access to appropriate rehabilitation

• Access to information and education

• Lack of opportunities to promote healthy living

• Lack of transition support services (e.g., transitional living facilities)

• Rehabilitation

• Personal Care Assistance

• Accessible, Affordable Housing

• Transportation

• Employment or Vocational Services

• Family/Caregiver Support Services

• Peer Support

10 SCI Survivor FocusGroups:• 71 survivors of SCI • 72% male• 66.2% white• More than 25%

Hispanic• Average age nearly

45 years old• Average of 12.7

years post injury

25 Key Leaders

119 SCI Survivors andCaregivers

WellFlorida asked...

• Personal factors (e.g., motivation, fear and health issues)

• Impact on benefits and health insurance status

• Need to obtain vocational retraining or additional education

• Workplace accessibility

• Leading issues: UTIs, pressure sores, chronic pain, muscle spasms, autonomic dysreflexia, and bowel and bladder issues

• Healthcare providers are not knowledgeable aboutSCI and related issues

• Inaccessibility of healthcare facilities is a critical issue for SCI survivors

Biggest Issues for SCI in Florida

Most NeededServices for SCI in Florida

Issues Impacting EmploymentPost Injury

Understanding Health-RelatedIssues as a Result of SCI

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Getting to/from Appointments

Getting to/from Social Activities

Getting in/out of Car/Van

Housekeeping

Preparing Meals

Bathing

Managing Bowel Activities

Managing Bladder Activities

Getting in/out of Bed

Positioning in Bed

0 5 10 15 20 25 30 35 40 45 50

Percentage

SCI Consumer and Caregiver Online Survey Findings

Percent of SCIConsumers RequiringAssistance to PerformDaily Activities

98 SCI consumers participated

in the online survey. More than

60% of consumers reported injuries

between C1-C8 that occurred more

than 5 years ago. More than 20%

of consumers reported needing

assistance with the identified

activities.

Legal

Advocacy

Negotiating Healthcare System

Financial Assistance

Transportation

Personal Care

Insurance Companies

Love/Friendship

Emotional Support

0 10 20 30 40 50 60 70 80 90 100

Percentage

Percent of SCICaregivers ProvidingIdentified Support

21 caregivers for individuals

with SCI participated in the online

survey. More than 75% of caregivers

reported being a spouse/partner or

parent to the individual they cared

for. More than 50% reported

providing more than 40 hours of

personal care per week.

Action Steps/Activities Responsible Parties Resources Needed Time Horizon

1. Review best practices.

2. Explore possible expansion ofMedicaid Waiver Program toinclude transitional living services.

3. Promote collaboration andpartnerships with existinginstitutions such as universities andhospitals. (Emphasize benefits forcollaboration—cost/benefitanalysis, hospitals vs. TLF, quality-of-life survey.)

4. Explore opportunities to supportfunding for existing programs.

5. Advocate for expansion ofinsurance policies to cover TLF.

BSCIP Advisory CouncilsTaskforce; executives from TLF

Qualified experts; staff;time; access to data;research on other states’ resources and practices

Medium Term:1–2 years

Strategic Issue 1: Statewide advocacy initiatives are needed to enhance accessto and increase funding for SCI services and supports.

Strategy 1.1Explore funding options for Transitional Living Facilities (TLF) in the stateof Florida.

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Guide to chart headings and acronyms

Strategy: The overarching method/approachthat will address the priority issue. There will beone strategy for each priority issue.

Action Step/Activity: The critical steps or ac-tivities needed to achieve the identified strategy.

Resources Needed: Financial, organizational,individual, etc. resources that will be needed tocomplete the desired strategy.

Responsible Parties: Agencies, organizations,individuals, etc. that will be responsible for orparticipate as key contributors to the completion of the desired strategy.

Time Horizon: Immediate (0-6 Months); ShortTerm (6 Months-1 Year); Medium Term (1-2Years); Long Term (>2 Years)

ADA Americans with Disabilities Act

AHCA Florida Agency for Health CareAdministration

AT Assistive Technology

ATE Assistive Technology and Education

BSCIP Brain and Spinal Cord InjuryProgram administered by the FloridaDepartment of Health

CIL Centers for Independent Living

DME Durable Medical Equipment

DOH Florida Department of Health

DOH/CMS Florida Department ofHealth Children’s Medical Services

FAAST Florida Alliance for AssistiveServices and Technology, Inc.

FACIL Florida Association of Centersfor Independent Living

FDOA Florida Disabled Outdoors Association

FLORIDA ARF Florida Association ofRehabilitation Facilities

FSCIRC Florida Spinal Cord Injury Resource Center

HUD U.S. Department of Housingand Urban Development

NSCIA National Spinal Cord Injury Association

OT Occupational Therapy

PT Physical Therapy

PVA Paralyzed Veterans of America

TAC Technical Advisory Committee

VA U.S. Department of Veterans Affairs

Chart Headings Acronyms


1. Identify appropriate legislators tosupport decision makers.

2. Investigate DME, AT and supportservices in other states.

3. Create a position paper ofrationale for appropriateequipment supplies, whichemphasize the cost benefit of DMEand supplies.

4. Explore Medicaid paying fordurable medical refurbishedequipment. (Research what otherstates are doing).

5. Ensure accountability forcompliance of existing regulationsfor DME to be covered underMedicaid.

6. Develop cooperative agreementbetween AHCA and DOH/BSCIP.

BSCIP; FAAST; VA/PVA;community partners; CILs;medical professionals whowrite prescriptions; BSCIPAdvisory Councils

Case studies; documentdenials; testimony fromSCI caregivers, familiesand physicians; NationalHealth Law Project;Advocacy Center forPersons with Disabilities;DME providers

Long Term:3–5 years

Strategy 1.3Advocate for regulation change to address SCI appropriate durable medicalequipment (DME) supplies, assistive technology (AT) and support servicesto be covered by all payor sources.


1. Increase the amount of upfrontservice and inpatient days.

2. Eliminate the 24-month wait forMedicare. Educate and collaboratefor public policy change forMedicare wait period.

3. Increase number of Medicaidoutpatient days and pay for OTservices.

4. Promote system of care toprivate insurance companies.

BSCIP; Florida InsuranceCommissionrepresentatives; FloridaHospital Association;Medicaid; SCI providers;SCI survivors; keyinsurance companyrepresentatives; AdvocacyCenter for Persons withDisabilities; BSCIPAdvisory Councils

Time; data; money;experts; legislativechampion(s)

Long Term:More than 2 years

Action Steps 2–4are systemschange issues andwill takeresources, timeand effort tofulfill these goals.

Strategy 1.2Advocate for enhanced access to and funding for the appropriate rehabilitation services for individuals with SCI.

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1. Find champions, for example,officers injured in the line of duty,veterans with SCI, police officerswith SCI, and other survivors andtheir families to tell their stories andadvocate to local representatives.

2. Create local coalitions to addressand advocate for BSCIP funding.

3. Identify/recognize champions inthe legislature who have workedtoward SCI causes.

4. Educate clerks of circuit courtsand law enforcement agenciesabout the use of funds from finesand fees associated with the SCItrust fund.

BSCIP Advisory Councils;FAAST; SCI supportgroups; law enforcement

VA/PVA; CILs; BSCIP;other interested and affected parties

Medium Term: 1–2 years

Strategy 1.4Identify key policy advocates to garner support among legislators for SCI funding.


1. Create a statewide taskforce toaddress accessibility.

2. Create local accessibilitytaskforces.

3. Create and disseminate mediacampaigns to address accessibilityand educate the public.

4. Conduct a needs assessmentfocusing only on access.

5. Market accessibility tools forindividuals with SCI and otherdisabilities.

BSCIP; FAAST/FSCIRC;CILs; Advocacy Center forPersons with Disabilities;city/county disabilitycoordinators; Division ofVocational Rehabilitation;BSCIP Advisory Councils

Offices of Codes andStandards; ADA;Advocacy Center forPersons with Disabilities;FSCIRC; Ombudsman;CILs; universities; BSCIP;BSCIP Advisory Councils;SCI support groups;disability advisory boards;other interested andaffected parties


Strategy 1.5Implement an advocacy plan to address SCI accessibility issues.

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1. Engage DOH/BSCIP/FSCIRCAdvisory Committee to provideoversight and approval ofadvertising materials.

2. Hold an annual activity day.

3. Proclamation for SCI by thegovernor and legislature.

4. Identify and engage media.

5. Develop campaign to include thefollowing: PSAs, TV telethon, web sitelinks and advertising, newsletters,social networking and posters.

State legislators; VA;DOH/BSCIP; Division ofVocational Rehabilitation;FAAST; BSCIP DesignatedFacilities; Peer Mentors;vendors; NSCIA;Christopher ReeveFoundation; DarrelGwynn Foundation;Medicaid; communitypartners; RegionalDemonstration Centers;CILs

Designated funding formedia coverage; BSCIPfunding throughcontractual partners;financial support withother foundations;volunteers; time;marketing experts

Long Term: More than 2 yearsOngoing

Strategic Issue 2: There is a need for enhanced training, education and awareness initiatives designed for specific audiences basedon identified needs.

Strategy 2.1Develop a multifaceted and diverse mass media campaign.


1. Research and develop curriculum(e.g., SCI 101).

2. Research and develop ADA website survey tools.a. Disseminate information onaccessibility issues and universaldesign for SCI to targeted audiences.

3. Identify and access availableresources for healthcare providers.a. Identify wellness and fitness needs of persons with SCI frompoint of injury throughout lifetime.b. Advocate for providers to havebest practices for SCI care andrehabilitation.

4. Provide regional trainings.

5. Incorporate disability sensitivitytraining to new employees along thelines of “diversity trainings” offeredby many companies.

FAAST/FSCIRC;DOH/BSCIP; healthcareprofessionals/educatorsand other experts asneeded; Florida HousingFinance Corporation;CILs; Advocacy Center forPersons with Disabilities;PVA; Division ofVocational Rehabilitation;universities (teachingmedical/nursing, planning,architecture, interiordesign); FDOA; BSCIPDesignated Facilities;Florida MedicalAssociation

Researcher (to draftproposal); mediacoordinator; funding; review of other states;Accessibility TAC (BuildingCodes and Standards);universities; existingstudies/research; U.S.Access Board

Long Term: 3+ yearsOngoing

Strategy 2.2Identify resources and partners to research, develop and disseminate educational materials and information to include community-based rehabilitation, wellness, safety, employment and community reintegration.

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1. Maintain toll-free phone lines forSCI Resource Center.

2. Conduct a membershipcampaign.

3. Enhance promotion andmarketing efforts.

4. Partner with libraries and existingeducational publication houses toidentify and disseminate materials(e.g., Lash Associates, UnitedSpinal, etc.).

5. Provide resources for all aspectsof SCI (e.g., personal care, etc.).

6. Provide prevention andeducation for the K-12 schools andpost-secondary schools.

7. Provide web-based materials andenhance current online services.

8. Ensure that materials are multi-lingual and accessible.

9. Update needs assessment every3-5 years.

Collaborative effort mustinclude survivors andfamilies, agencies andorganizations; communitypartners; FAAST;DOH/BSCIP; SCIResource Center

Researcher; funding;existing staff


Some Activities:Ongoing

Strategy 2.3Maintain a state-of-the-art centralized clearinghouse for SCI.

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1. Enhance visibility of Peer Mentorsin existing support groups.

2. Establish Peer Mentorcoordinators in rehabilitation units.

3. Collaborate with DOH/BSCIP,community partners, CILs andFSCIRC.

4. Increase opportunities forsharing information in a timely,cost-effective manner.

5. Increase outreach at SCIfacilities.

6. Develop updated materials andinformation to display inrehabilitation facilities, CILs, etc.

7. Increase advertising inorganization newsletters,publications, web sites, etc.

8. Enhance Peer Mentor program toassist parents and caregivers forpediatric SCI.

Support group leaders;FSCIRC; mentors; CILs;hospitals; rehabilitationstaff, includingpsychiatric; OT; PT;Recreation Therapists;parents and caregivers;DOH/CMS; BSCIP casemanagers

Time; money; access totechnology, includingvideo conferencing;manpower


Some Actions:Ongoing

Strategy 2.4Increase awareness and utilization of the Peer Mentor program.


1. Utilize Peer Mentor program as avehicle for informationdissemination.

2. Increase educational in-services,enhance ATE web site/database,and provide trainings on ATEservices.

3. Assist with access to state andnational conferences for SCIsurvivors and caregivers on ATE.

4. Provide device loan andrefurbishing.

5. Provide demonstrations andindividualized training for ATdevices.

AT vendors; FSCIRC;DOH/BSCIP; role models;hospitals; rehabilitationcenters; RegionalDemonstration Centers;CILs; BSCIP casemanagers

Technology; experts; time;money; individuals withSCI

Medium: 1–2 years

Strategy 2.5Enhance and maximize independence of SCI survivors through the use of assistive technology and education (ATE).

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1. Identify needs impacting publictransportation.

2. Identify needs to promote accessto private transportation.

3. Develop standards andrecommendations for publictransportation.

4. Promote standards to keytransportation stakeholders.

Department ofTransportation; BSCIP;SCI providers; SCIconsumers; transportationvendors; Florida HighwayPatrol; Governor’sCommission on Disabilities;Division of VocationalRehabilitation; CILs;FAAST; county and citygovernment; AdvocacyCenter for Persons withDisabilities

Time; data; access to experts

Long Term: More than 2 years

Strategic Issue 3: Initiatives and activities are needed to promote physical andprogrammatic accessibility for individuals living with SCI.

Strategy 3.1Develop standards of services to promote access to public and privatetransportation for persons with SCI.

*Visitability: single-family or owner-occupied housing designed in such a way that it can be lived in or visited by people who have trouble withsteps or who use wheelchairs or walkers. A house is visitable when it meets three basic requirements: (1) One zero-step entrance; (2) Doors with32 inches of clear passage space; (3) One accessible bathroom on the main floor.

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1. Identify and provide datashowing housing needs.

2. Create position paper to educateand inform public on the housingneeds for individuals with SCI andother mobility-impaired persons.Include in the document countiesthat have visitability ordinances (for new home construction and remodification).

3. Identify funding opportunities forhousing needs.

4. Collaborate with otherorganizations to create positionpaper and educate lawmakers onbuilding codes.

5. Create user-friendly educationaltool for ADA/Florida Building Codecompliance.

FAAST; housingcoordinators; BSCIP;community-basedorganizations/communitypartners; BSCIP AdvisoryCouncils; Advocacy Centerfor Persons withDisabilities; FloridaHousing Finance Corp.;Accessibility TAC; CILs

Testimonies of SCIfamilies; UF ShimburgCenter for AffordableHousing; FAAST ResourceCenter; Department ofHousing at USF and otheruniversities; Jack Humburgof Boley Centers; FloridaHousing Coalition; HUD

Medium Term:1–2 years

Strategy 3.2Advocate at state level to achieve visitability* for Florida Building Codes.


1. Establish a taskforce.

2. Establish staff liaison.

3. Utilize technology such as online web conferences (e.g.,GoToMeeting), internet,telemeeting, e-mail and blogs.

4. Combine meetings with existingmeetings, events or venues.

5. Acknowledge contributingpartners by introducing partnerorganizations in the newsletter in acolumn called “Meet the<organization name>.”

6. Expand FSCIRC committee toinclude organizations such asVocational Rehabilitation, CILs,FACIL, etc.

FSCIRC AdvisoryCommittee; BSCIPAdvisory Councils

Staff from participatingorganizations and possibleutilization of thefollowing: volunteerorganizations, collegestudent interns, retiredprofessionals, seniors andhigh school students;funding; time; database;manpower

Short Term:6 months–1 year

Strategic Issue 4: System-wide partnership and collaboration is needed to enhance communication among SCI survivors and their families, providers and other stakeholders.

Strategy 4.1Use the SCI strategic plan as a platform to promote collaborative partnerships among organizations.


1. Review existing entities, advisorycouncils (counties, cities, etc.).

CILs; FAAST; AdvocacyCenter for Persons withDisabilities; supportgroups; PVA; FSCIRC

PVA; law enforcement;Advocacy Center forPersons with Disabilities;BSCIP; GovernorsCommission onDisabilities; CILs; FACIL

Short/MediumTerm: 12–18 months

Strategy 4.2Explore existing entities to serve as advisers on local accessibility issues for SCI.

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Spinal Cord Injury Long-Term Statewide Strategic Planning Conference Invitees January 2010Luis Amaro PresidentSCI Support Group of South Florida Beta Chapter

Judith BarrettExecutive DirectorAbility 1st

Ramond Bruce National Service OfficerParalyzed Veterans of America

Diana Cardenas, MD, MHA Professor and ChairUniversity of Miami Leonard M. Miller Schoolof Medicine, Department of RehabilitationMedicine

Florida Alliance for Assistive Services and Technology, Inc.Steve HowellsExecutive DirectorMichael Fitch Executive Assistant Amelia NybergAdministrative Assistant

Florida Department of HealthBrain and Spinal Cord Injury ProgramThom DeLilla, BS, CDMSBureau ChiefKristine Shields, MPAContract ManagerMary Brown, MBARegional ManagerScott Homb, PhD, CRC, CBISRegional ManagerDan NewmanITI CoordinatorMary Murray, MS, CRC, CBISSenior Case Manager

FAAST Spinal Cord Injury Resource CenterJustin Stark Spinal Cord Injury Coordinator Anthony Radano Program SpecialistTom WilliamsonProgram Specialist

Frank CherryExecutive DirectorCIL Disability Resource Center

Joseph DiDomenicoExecutive DirectorCaring and Sharing CIL

Dolores Hardee, PTSCI Support Group CoordinatorHealthSouth of Spring Hill

Liz Howe Executive DirectorCIL of Central Florida

Susan Ignash, RN, CRRN, CBISCMS BSCIP Nurse Care CoordinatorFDOH Children's Medical Services

Melinda Jordan, MA, CRCFDOE, Division of Vocational Rehabilitation

William Kennedy, MHSExecutive DirectorCIL of North Central Florida

Robin Kohn, MSW, LCSWGreater Orlando SCI Network CoordinatorBSW Program CoordinatorUCF School of Social Work

Alex Lutin President/Peer MentorSCI Support Group of South Florida AlphaChapter /FSCIRC

Donna Marini Peer Mentor FSCIRC/Donna Marini Foundation

Jennifer McParland, PT, COMT SCI Program Director Brooks Rehabilitation Hospital

Mario Olavarria, Psy.DRehabilitation PsychologistJackson Memorial Hospital

Barb Page Senior Advocate/InvestigatorAdvocacy Center for Persons with Disabilities-Persons with Disabilities for Persons with Dis-abilities, Inc.

Bonnie Rice, ARNP, FNP-C, CRRN, CPST,CPHQ Pediatric Nurse PractitionerTampa General Hospital

Brenda Ruehl Executive DirectorSelf-Reliance CIL

Terry Ward, PhD, ATPPresidentTerry Ward Consulting LLC

Kenneth Weas National DirectorCentral Florida Paralyzed Veterans of America

Karen Wilkinson, MS, CRCFDOE, Division of Vocational Rehabilitation

Joan Winkler Executive DirectorFlorida Gulf Coast Paralyzed Veterans of America

Bonnie Wirth, RN, CRRN Consultant

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FAAST Spinal Cord Injury Resource CenterAdvisory CommitteeStrategic PlanningWorkgroup

Mary Brown, MBARegional ManagerFDOH Brain and Spinal Cord Injury Program

Michael Fitch Executive AssistantFlorida Alliance for Assistive Services and Technology, Inc.

Steve HowellsExecutive DirectorFlorida Alliance for Assistive Services and Technology, Inc.

David JonesPresidentFlorida Disabled Outdoors Association

Bob Melia, MPASpinal Cord Network CoordinatorRehabilitation ServicesOrlando Regional Healthcare

Mario Olavarria, Psy.DRehabilitation PsychologistJackson Memorial Hospital

Barb Page Senior Advocate/InvestigatorAdvocacy Center for Persons with Disabilities, Inc.

Anthony RadanoProgram SpecialistFAAST Spinal Cord Injury Resource Center

Susan J. Redmon, RN, MPH, CCM, CRRNCommunity Health Nurse ConsultantFlorida Department of Health Children'sMedical Services

Kristine Shields, MPAContract ManagerFDOH Brain and Spinal Cord Injury Program

Justin StarkSpinal Cord Injury CoordinatorFAAST Spinal Cord Injury Resource Center

Tom WilliamsonProgram SpecialistFAAST Spinal Cord Injury Resource Center

Spina

Produced by WellFlorida Council

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