Working with Caregivers in your Home
A Guide for Families of Children with Special Health Care Needs
The purpose of this information is to help families who use or need home-based caregivers or other in-home service providers for their children with disabilities, chronic illnesses or other special needs.
It is natural to feel nervous or unsure about having someone you may not know come into your home to provide care or other services for your child with special needs.
To help you get a good start in your relationship with your child’shome-based caregiver, here are somesteps to take before services begin:
- Learn as much as you can about the scope or description of services to be provided, and about the agency that employs the person who will be your child’s caregiver.
- Be open and honest about your expectations and discuss them with the agency management. Find out what the agency expects of you.
- Ask about your rights and options in case you are not satisfied with the care or services your child receives. You may want to ask the agency for a different caregiver or switch to another agency altogether.
Caregivers in your Home
There are different types of caregivers who can provide services to your child in your home. Some examples are nurses, nurse aides or technicians, personal attendants or assistants, therapists, teachers, and respite care providers or sitters.
Getting one or more of these home based services depends upon factors such as: your child’s diagnosis or disability, age, program eligibility or availability (waiting list), funding source, as well as rules and regulations specific to your state.
You, the parent or guardian, should be able to interview and have final approval of any home-based caregiver for your child. You should decide if your child or other family members should participate in the interview.
Family Rights
Families should expect the service agency that employs the caregiver to do the following:
- Recognize that you, the parent or guardian, are the main authority for decisions in the home.
- Provide fully qualified and trained personnel suitable to the job, including proof of background checks and references from previous employers.
- Follow through with agreed-upon arrangements for times when the regular caregiver is unavailable.
- Replace a caregiver who is not providing good care for your child.
- Arrange for meetings with the agency supervisor, home care staff, and your family to review and resolve any problems.
- Maintain ongoing communication as agreed upon to discuss services and plan for future needs or changes.
“I treasure the loyalty, competence and reliability of my son’s home health aide. She is a part of our family. I try to treat her with respect so she knows how valued and appreciated she is.”
Communication is Key
Keeping communication open and honest, but respectful, is the best way to maintain a positive relationship with your child’s caregiver and with the agency that employs her or him.
Family Responsibilities
Communicate your child’s needs as specifically as you can and have all agreements in writing. If appropriate, talk with your child and the caregiver about what activities or situations may be decided by the child and which ones may not be negotiated.
Be clear in the beginning about any household rules, like “no smoking,” but be sure your rules are reasonable. For instance, can you provide an ashcan for a caregiver who agrees only to smoke outdoors during breaks?
Families should uphold their end of any agreements and act respectfully toward caregivers. Examples:
- Always make sure the caregiver knows where you are, how to reach you, what time you plan to return home, and what to do in an emergency.
- You, and not the caregiver, are responsible for all other children or family members in the household.
One final suggestion: Talk with other families who use in-home caregivers and learn from their experiences.
Acknowledgments: Family Voices of TN; University of Illinois at Chicago Home Care Program (ph: 312-996-6380).
Where to find more information:
American Association for Homecare (phone: 703-836-6263) www.aahomecare.org
Family Caregiver Alliance / Nat’l Center on Caregiving (toll-free: 800-445-8106) www.caregiver.org
National Association for Home Care (phone: 202-547-7424) www.nahc.org
PACER Center, Inc. Health Information and Advocacy Center (phone: 952-838-9000) www.pacer.org
Electronic Newsletters: www.care-givers.com and www.caregiver.com
Who to contact in Tennessee:
Family Voices
Tennessee Disability Coalition
955 Woodland Street, Nashville, TN 37206
Phone: 615-383-9442
Toll-free: 1-888-643-7811
Email: familyvoices@tndisability.org
www.tndisability.org/familyvoices
Who to contact Nationally:
Family Voices
3411 Candelari a N.E., Suite M, Albuquerque , NM 87107
Toll free: 1-888-835-5669
Phone: 505-872-4774
Fax: 505-872-4780
Email: kidshealth@familyvoices.org
www.familyvoices.org
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