Caring for Rare Disease Caregivers

A Guide for Family Caregivers of Loved Ones with Rare Diseases

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    Questions for Home Care Providers

    Questions to Ask All Home Care Providers

     

    • Has the caregiver been trained?

      • By whom?

      • Extent of training?

      • Does the agency train all its caregivers?

      • Does the training include education on dealing with rare diseases?

     

    • Have the agency’s caregivers passed criminal background checks and drug screenings, and have personal references been secured on all caregivers?

     

    • Are the caregivers bonded and insured? This means the company covers claims and insurance, so the homeowner is not liable should something happen.

     

    • Does the caregiver have workers’ compensation coverage?

     

    • Can you check references on the agency?

     

    • Does the agency offer back-up / replacement caregivers?

     

    • How much input will you have in selecting the caregivers?

     

    • What restrictions (if any) apply to the services provided?

      • Hours of service?

      • Weight restrictions?

     

    • How much flexibility will you have in setting a schedule for services?

     

    • How much notice does the agency need to begin or cancel service?

     

    • What is the cost of service, including:

      • Minimum hours of service per visit / week / month?

      • Special overnight rates?

     

    • Does the agency maintain a quality assurance or supervisory program?

     

    • What is the agency’s communication plan to keep families informed?

     

    • Does the agency require a service deposit?

     

    • Does the agency offer the personal care services the patient needs, like assistance with bathing, dressing, and using the bathroom?

     

    • Are patients’ special needs, such as language preferences, accommodated?

    Caregiving Right Now
    Learning to Think Like a Care Manager
    Patient File Checklist
    Going to The Doctor
    Medication List
    How to Communicate Symptoms​
    Crisis Symptom Reporting Guide
    Technology Can Help Caregivers

    When Keeping Your Loved One at Home Means Bringing In Help

    What Is Home Care?
    Getting Started with Home Care
    Questions for Home Care Providers
    Additional Questions to Ask a Medical Home Care Provider:

     

    In addition to the questions above, it’s important to ask a medical home care provider the following:

     

    • Is the home healthcare agency certified?

     

    • Does the home healthcare agency offer a full range of home healthcare services, including skilled nursing; physical, occupational and speech therapies; IV therapy; and home health aides?

     

    • How do you receive a referral for home healthcare agency services? A referral can be made by anyone involved in a patient’s care – physician, family or others. If someone other than a physician makes referrals, many home healthcare agencies contact the patient’s physician to approve orders for service.

     

    • Does the hospital discharge planner, doctor, or social worker recommend the home healthcare agency? Those recommendations can serve as a second reference.

     

    • Does the home healthcare agency have the staff available at night and on weekends for emergencies?

     

    • Where else could you find information about certified home healthcare agencies?

     

    • Does the home healthcare agency have staff available to provide the type and hours of care as prescribed by the physician?

     

     

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