Resources

Life Care Planning Research Resource List

Note: Any reference to organizations, products, or services below does not constitute or imply the endorsement, recommendation or favoring of IARP or IALCP.  This is not a comprehensive list of resources.

Table of Contents

Architectural Renovations

Assistive Technology

Case Management / Care Coordination / Advocacy

Charges - Facility

Charges - Physician

Coding

Exercise and Therapy Equipment

Facility Care

General Resources

Home Healthcare

Hospital / Health System Pricing Information - Publicly Available Master Charge Lists & Price Estimate Tools

Household Services

Life Care Planning Certification Agencies

Life Care Planning Training Programs

Medical Equipment

Medication Costs

Orthotics/Prosthetics

Recreation

Supplies

Transportation

Vocational Resources

Wheelchairs / Mobility Devices / Accessories

Publications

Resources for Specific Disability

Amputation

Blindness / Low Vision

Cerebral Palsy

Intellectual and Developmental Disabilities

Spinal Cord Injury

Traumatic Brain Injury

Transplantation

Architectural Renovations

• All in One Accessibility: http://allinoneaccess.com/
• Evolve: https://www.evolve-emod.com/
• Karl, J. & Weed, R. Home Assessment in Life Care Planning, Journal of Life Care Planning, 5, 159-171, 2007.
• Universal Design Resource: http://www.universaldesignresource.com/
• VA Specially Adapted Housing Program: https://www.benefits.va.gov/benefits/factsheets/homeloans/SAHFactsheet.pdf

Assistive Technology

• AbleNet: ablenetinc.com
• Amazon.com: Amazon Echo; iPad and disability apps
• Apple.com: iPad and learning/communication apps
• Tobii Dynavox: www.tobiidynavox.com/em-us

Case Management/Care Coordination/Advocacy

• CCMC Care Management Toolkits: https://www.caremanagementtools.com/
• Specialized Care for Children, University of Illinois at Chicago: https://dscc.uic.edu/
• TASH: https://tash.org/

Charges - Facility

• American Hospital Directory:  https://www.ahd.com/
• Context 4 Healthcare: context4healthcare.com (subscription)
• CostHelper: health.costhelper.com/cost-medical-depts.html
• FAIR Health license: See IARP life care planning section website for licensing information
• Healthcare Cost and Utilization Project (HCUP): hcupnet.ahrq.gov
• Medical Fees Directory by PMIC
• Medicare procedure price lookup: https://www.medicare.gov/procedure-price-lookup/
• Quest Diagnostics: questdirect.questdiagnostics.com
• VA Reasonable Data Charges https://www.va.gov/COMMUNITYCARE/revenue_ops/RC_Data_Tables.asp

Charges - Physician

• CMS Physician Fee Schedule
• Context 4 Healthcare: context4healthcare.com (subscription)
• FAIR Health license: See IARP life care planning section website for licensing information
• Medical Fees Directory by PMIC
• Physicians’ Fee and Coding Guide: http://www.coderscentral.com/physicians-fee-coding-guide/
• Physicians Fee Reference Book

Coding

• Boston Scientific Coding & Payment Guides: https://www.bostonscientific.com/en-US/reimbursement/coding-and-payment-guides.html
• Current Procedural Terminology (CPT). Chicago, IL: American Medical Association. (published annually)
• Find-A-Code: https://www.findacode.com/ (subscription)
• ICD-10-CM Code Book
• Medtronic: https://www.medtronic.com/us-en/healthcare-professionals/reimbursement.html
• Optum360: https://www.optum360coding.com/ (subscription)
• Super Coder: www.supercoder.com (subscription)

Exercise and Therapy Equipment

• Fitness Superstore: https://www.fitnesssuperstore.com/Default.asp
• Flaghouse: https://www.flaghouse.com/
• MOTOmed: https://www.motomed.com/en/
• Myolyn (Myocycle FES Therapy System): https://myolyn.com/
• Rifton:  https://www.rifton.com/

Facility Care

• Commission on the Accreditation of Rehabilitation Facilities: www.carf.org
• Genworth Cost of Care Survey 2019: https://www.genworth.com/aging-and-you/finances/cost-of-care.html
• Medicare.gov Nursing Home Compare: https://www.medicare.gov/nursinghomecompare/search.html?

General Resources

• Age Calculator: http://www-users.med.cornell.edu/~spon/picu/calc/agecalc.htm
• American College of Surgeons: https://www.facs.org/
• American Time Use Survey: www.bls.gov/tus
• Centers for Disease Control and Prevention: https://www.cdc.gov/
• Foundation for Life Care Planning Research: http://www.flcpr.org/
• Inflation Calculator: www.bls.gov/data/inflation_calculator.htm
• Kenhub (anatomy tool): https://www.kenhub.com/en/dashboard
• National Council on Disability: https://www.ncd.gov/
• Spine-health: www.spine-health.com
• The Care Planner Network: http://careplanners.net/pages/Links.cfm
• Veterans Benefits Administration: http://benefits.va.gov
• Veteran/PTSD Sleep Guide: https://www.sleepadvisor.org/military-and-veteran-sleep/

Home Healthcare

• Brightstar Home Care: www.brightarcare.com
• Encompass Home Health: www.encompasshealth.com
• Interim Healthcare: www.interimhealthcare.com
• Maxim Healthcare Services: www.maximhealthcare.com
• Visiting Angels: https://www.visitingangels.com/

Hospital/Health System Pricing Information - Publicly Available Master Charge Lists & Price Estimate Tools

Note: Not an exhaustive list. Google “[Hospital name] master charge list” for more

• Adventist Health Charge Sheet (Oregon): www.adventisthealth.org/patient-resources/healthcare-costs-and-charges
• Legacy Health System (Oregon): https://www.legacyhealth.org/patients-and-visitors/paying-for-your-care/payment-plans-and-assistance/hospital-pricing.aspx
• Mayo Clinic: https://costestimator.mayoclinic.org/
• Partner’s Hospital System (Massachusetts General): https://www.partners.org/for-patients/Patient-Billing-Financial-Assistance/Hospital-Charge-Listing.aspx
• Renown Hospital (Reno): https://www.renown.org/wp-content/uploads/Renown_CDM_20190501.pdf
• University of Miami Health: https://umiamihealth.org/billing-insurance/hospital-pricing-information
• US Hospital Finder: www.ushospitalfinder.com

Household Services

• Fixr: https://www.fixr.com/
• Homewyse: https://www.homewyse.com/
• ProMatcher: https://www.promatcher.com/

Life Care Planning Certification Agencies

• International Commission on Health Care Certification (ICHCC): www.ichcc.org
• Certified Nurse Life Care Planner (CNLCP): www.cnlcp.org

Life Care Planning Training Programs

• Capital University Law School: https://www.capital.edu/academics/graduate-programs/law-school/life-care-planner-program/
• FIG Services, Inc.: https://www.figeducation.com/life-care-planning/
• Institute of Rehabilitation Education and Training (IRET): https://iretprograms.com/

Medical Equipment

• Allegro Medical: http://www.allegromedical.com/
• Colonial Medical Supplies: http://www.colonialmed.com/
• CVS: http://www.cvs.com/
• eSpecial Needs: eSpecialNeeds.com
• Flex-A-Bed: htps://flexabed.com
• Hillrom: hillrom.com
• Hillrom Respiratory: https://respiratorycare.hill-rom.com/
• Invacare: http://www.invacare.com/
• Life Tech: www.lifetechcare.com
• New Leaf Home Medical: https://www.newleafhomemedical.com/
• Performance Health (formerly Patterson Medical): http://www.performancehealth.com/
• RehabMart: www.rehabmart.com
• RespirTech: respirtech.com
• Rifton: www.rifton.com
• Sears: www.sears.com/health-wellness/b-1024539
• Southwest Medical: http://www.southwestmedical.com/
• Spinlife: spinlife.com
• Sunrise Medical: Sunrisemedical.com
• Vitality Medical:  www.vitalitymedical.com
• Walgreens: http://www.walgreens.com/
• Walmart: http://www.walmart.com/

Medication Costs

• CVS/Walgreens
• Goodrx.com
• Rxpricequotes.com
• Wellrx.com
• Medispan.com
• www.redbook.com/redbook/

Orthotics/Prosthetics

• Benik: www.benik.com
• Better Braces: www.betterbraces.com
• Dynamic Orthopedics: dynamicorthopedics.com
• DJO Global: www.djoglobal.com
• Hanger Orthotics and Prosthetics: www.hangerclinic.com
• Ottobock: https://www.ottobockus.com/

Recreation

• Adaptive Adventures: https://adaptiveadventures.org/ (Colorado, Illinois)
• Breckenridge Outdoor Education Center: https://boec.org/ (Breckenridge, CO)
• CHAMP Camp: www.champcamp.org (Indiana)
• Fat Brain Toys: https://www.fatbraintoys.com/
• Fowler Center: http://thefowlercenter.org/ (Michigan)
• National Sports Center for the Disabled: https://nscd.org/ (Winter Park, CO)
• Special Vacations: https://specialvacations.net/
• Wilderness Inquiry: https://www.wildernessinquiry.org/
• Wilderness on Wheels: https://boec.org/ (Colorado)
• YMCA - some local branches offer child care and classes geared toward people with physical or cognitive disabilities

Supplies

• Allegro Medical: allegromedical.com
• Betty Mills Company: www.bettymills.com
• HDIS: https://www.hdis.com/ (incontinence products)
• Medicare Supplier Directory: https://www.medicare.gov/supplierdirectory/search.html
• Medline Industries: www.medline.com
• Vitality Medical:  www.vitalitymedical.com

Transportation

• Adaptive Driving Alliance: https://www.adamobility.com/consumers/resources
• AMC Medical Transportation: http://amcmedicaltransportation.com/
• AMS Vans: https://www.amsvans.com/
• The Association for Driver Rehabilitation Specialists: www.aded.net
• National Mobility Equipment Dealers Association: http://www.nmeda.com/
• Personal Mobility: http://www.personalmobilityinc.com/ (Illinois)
• Rollx Vans: https://www.rollxvans.com/
• Vantage Mobility International: https://www.vantagemobility.com/

Vocational Resources

• CareerOneStop: https://www.careeronestop.org/
• Employer Assistance and Resource Network on Disability Inclusion: https://www.askearn.org/state-vocational-rehabilitation-agencies/
• VA Veterans Benefits Association Vocational Rehabilitation and Employment https://www.benefits.va.gov/vocrehab/

Wheelchairs/Mobility Devices/Accessories

• 1800Wheelchair: http://www.1800wheelchair.com/
• Convaid: convaid.com
• Invacare: http://www.invacare.com/
• National Seating & Mobility: https://www.nsm-seating.com/
• NuMotion: www.numotion.com
• Permobil: permobilus.com
• Spinlife: http://www.spinlife.com/
• Sunrise Medical: sunrisemedical.com
• The Scooter Store: http://www.thescooterstore.com/
• TravelScoot: travelscoot.com

Resources for Specific Disability

• Amputation

  • Amputee Coalition: https://www.amputee-coalition.org/

  Blindness/Low Vision

  • American Foundation for the Blind: https://www.afb.org/
  • American Printing House for the Blind: https://www.aph.org/
  • Association for Education and Rehabilitation of the Blind and Visually Impaired: https://aerbvi.org/
  • Freedom Scientific: https://www.freedomscientific.com/
  • Friedman Place: Group Home for young adults and seniors with low vision/blindness in Chicago: https://friedmanplace.org/
  • Hadley School for the Blind: https://www.hadley.edu/
  • Humanware: http://www.humanware.com/en-usa/home (Victor Reader Trek)
  • Independent Living Aids, LLC: https://www.independentliving.com/
  • Lighthouse Center for Vision Loss Low Vision Store: https://www.lcfvl.org/store
  • Lighthouse, Chicago: https://chicagolighthouse.org/
  • Lighthouse Guild: www.lighthouseguild.org
  • MaxiAids: https://www.maxiaids.com/
  • National Federation of the Blind: https://www.nfb.org/
  • National Library Service at the Library of Congress: https://www.loc.gov/nls/
  • National Library Service for the Blind and Print Disabled: https://www.loc.gov/programs/national-library-service-for-the-blind-and-print-disabled/about-this-service/
  • Perkins School for the Blind: https://www.perkins.org/
  • The Seeing Eye: https://www.seeingeye.org/
  • Smarthome: https://www.smarthome.com/
  • Washington State Department of Services for the Blind - dsb.wa.gov

  Cerebral Palsy

  • Developmental Disabilities Issues Exploration Forum: Cerebral Palsy: https://effectivehealthcare.ahrq.gov/sites/default/files/pdf/cerebral-palsy-issues_white-paper.pdf
  • HealthyChildren.org: https://www.healthychildren.org/English/health-issues/conditions/developmental-disabilities/Pages/Cerebral-Palsy.aspx
  • United Cerebral Palsy: https://ucp.org/

  Intellectual and Developmental Disabilities

  • Easter Seals: https://www.easterseals.com/
  • The Arc: https://thearc.org/

  Spinal Cord Injury

  • Craig Hospital: https://www.neuroskills.com/
  • National Spinal Cord Injury Statistical Center: https://www.nscisc.uab.edu/
  • New Mobility Magazine: https://www.newmobility.com/
  • Northwest Regional Spinal Cord Injury System: http://sci.washington.edu/
  • Paralyzed Veterans of America: www.pva.org
  • Shepherd Spinal Cord Injury Program: https://www.shepherd.org/
  • United Spinal Association: https://spinalcord.org/
  • University of Alabama Spinal Cord Injury Model System: https://www.uab.edu/medicine/sci/uab-scims-information

  Traumatic Brain Injury

  • Brain Injury Association of America: https://www.biausa.org/
  • Centre for Neuro Skills: https://www.neuroskills.com/
  • Craig Hospital: https://www.neuroskills.com/
  • Florida Institute for Neurologic Rehabilitation: http://www.finr.net/
  • Learning Services: https://learningservices.com/
  • Pate Rehabilitation: https://www.paterehab.com/
  • Rainbow Rehabilitation Centers: https://www.rainbowrehab.com/
  • Special Tree: https://www.specialtree.com/

  Transplantation

  • Mayo Clinic Transplant Center Costs and Insurance: https://www.mayoclinic.org/departments-centers/transplant-center/sections/costs-insurance/ptc-20203904
  • Milliman: https://www.milliman.com/en/insight/2020-us-organ-and-tissue-transplants
  • Scientific Registry of Transplant Recipients: https://www.srtr.org/
  • United Network for Organ Sharing: https://unos.org/
  • Donate Life America: www.donatelife.net
  • Organ Procurement and Transplantation Network: https://optn.transplant.hrsa.gov/

Publications

Arias, Elizabeth and Xu, Jiaquan. “United States Life Tables”. CDC National Vital Statistics Reports. June 24, 2019; Volume 68(7): 1 – 65.

Drnach, M., PT, DPT, MBA, PCS, “The Clinical Practice of Pediatric Physical Therapy: From the NICU to Independent Living”. Lippincott Williams & Wilkins. 2008.

Delitto, Anthony, et al. “Low Back Pain: Clinical Practice Guidelines Linked to the International Classification of Functioning Disability, and Health from the Orthopedic Section of the American Physical Therapy Association”. Journal of Orthopedic Sports Physical Therapy. 2012; Volume 42(4): A1 – A57.

Haak, Peterson; Lenski, Madelein; Hidecker, Mary Jo Cooley; Li, Min; and Paneth Nigel. “Cerebral palsy and aging”. Developmental Medicine and Child Neurology. 2009; Volume 51(4): 16 – 23.

Hosack, Kenny.  (November 2014). Spinal Cord Injury Re-evaluation and Follow-up Care.  Craig Hospital. https://craighospital.org/uploads/CraigHospital.ReevaluationWhitepaper_2014.pdf

Journal of Life Care Planning. https://rehabpro.org/page/journal life care

Marini, Irmo; Vang, Chia; Antol, Danielle Leigh; Mora, Elaine M.; Quijano, Paola; Pinon, Rigel Macarena; and, Cuevas, Sergio. “Redux: Empirical Validation of Medical Equipment Replacement Schedules in Life Care Plans”. Journal of Life Care Planning. 2019; Volume 17(2): 5 – 17.

Novak, Iona; Smithers-Sheedy, Haley; and, Morgan, Cathy. “Predicting equipment needs of children with cerebral palsy using the Gross Motor Function Classification System: a cross-sectional study”. Disability and Rehabilitation: Assistive Technology”. 2012: Volume 7(1): 30 – 36.

Rehabilitation Professional. https://rehabpro.org/page/rehabpro journal

Riddick-Grisham, S. & Deming, L. M. (Eds.). (2011).  Pediatric Life Care Planning and Case Management.  2nd ed. Boca Raton, FL: CRC Press.

Shore, Benjamin; Spence, David; and Graham, HK. “The role for hip surveillance in children with cerebral palsy”. Current Reviews in Musculoskeletal Medicine. 2012; Volume 5(2): 126 – 134.

U.S. Department of Education, Office of Special Education and Rehabilitative Services, A Transition Guide to Postsecondary Education and Employment for Students and Youth with Disabilities, Washington, D.C., 2017. 
https://www2.ed.gov/about/offices/list/osers/transition/products/postsecondary-transition-guide-may-2017.pdf

Waltham, MA Featured Guides in “Special Needs Care for Adult Children: Cost of Care”. Care.com, Care.com, July 2017. https://www.care.com/c/stories/10266/special-needs-care-for-adult-chldrencost-of-care.

Weed, R. & Berens, D. (Eds.). (2019).  Life Care Planning and Case Management Handbook (4th ed.). Abingdon, UK: Routledge Press.

Wynter, M; Gibson, N; Kentish, M; Love, S; Thomason, P; and, Graham, H. Kerr. “The consensus statement on Hip Surveillance for Children with Cerebral Palsy: Australian Standards of Care”. Journal of Pediatric Rehabilitation Medicine: An Interdisciplinary Approach. 2011: 183 – 195.