Family Guide to Respite Care

Family Guide to
Respite Care














“Respite” refers to short term, temporary care provided to people with
disabilities in order for their families to take a break from the daily
routine of care giving.








August 2006

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Family Guide to
Respite Care



The Special Kids Network’s regional staff in collaboration with their community partners and
the Pennsylvania Department of Health’s Children with Special Health Care Needs Consultants
produced this guide in response to a recognized need to fill a gap in respite care services for
families with children with special health care needs. This guide was developed to assist in
defining respite care, highlight benefits of respite care, outline what to expect from respite
providers, explain what is expected of you, and provide a list of possible local agencies that help
families locate respite programs in their area. Working with state agencies and community
organizations, the Family Guide to Respite Care was developed to decrease the informational
gap in obtaining respite care services for children with special health care needs.




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Family Guide to Respite Care – August 2006

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Table of Contents
RESPITE CARE-AN INTRODUCTION ..................................................................................3
WHO NEEDS RESPITE CARE? ............................................................................................4
BENEFITS OF RESPITE CARE .............................................................................................5
HOW DO I CHOOSE A RESPITE PROGRAM OR PROVIDER? .......................................6
FREQUENTLY ASKED QUESTIONS WHEN LOOKING FOR RESPITE CARE:............7
POSSIBLE PROVIDER’S RESPONSIBILITY .......................................................................8
SAMPLE RESPITE CARE FACT PACKET ...........................................................................9
HOW DO WE ENFORCE FAMILY “RULES”? ....................................................................20
RESOURCES FOR HELP IN LOCATING RESPITE PROVIDERS..................................21
POSSIBLE LOCAL AGENCIES TO HELP LOCATE OR PROVIDE RESPITE
SERVICES ..............................................................................................................................21
REFERENCES .......................................................................................................................21
ACKNOWLEDGEMENTS......................................................................................................22
BIBLIOGRAPHY.....................................................................................................................23





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RESPITE CARE—AN INTRODUCTION

This informational guide was designed to assist families with making the decision to use
and find respite support that fits their individual needs. Respite can be provided by a
family member, a friend, a neighbor, a person from your faith community congregation,
etc. It can also be activity based such as Girl Scout troops or Boy Scout troops,
swimming lessons, etc. There are questions every family has when exploring the option
of using respite services, including what they should expect from a provider and what is
expected from the families, types of respite services available in the area and the cost
of respite programs. The majority of families recognize the benefits of using respite
services for the family and for the child with special needs.

“Caring for a child with special needs is a full-time job. It is easy to become
overwhelmed with the care needs of a child with a disability or chronic illness. Often,
families who would not hesitate to call for relief from the constant care of their typical
children hesitate to call for relief from the care of their child with a disability or special
health care needs. That is why respite, as the word implies, is truly an interval of rest.
Respite can be your answer to renewed energies and give a new perspective to thinking
and to planning ahead” (National Information Center for Children and Youth with
Disabilities briefing paper, June 1996).

"Respite" refers to short term, temporary care provided to people with disabilities in
order that their families can take a break from the daily routine of care giving.
Respite can be based out of the family’s home or out in the community. Respite
services can vary from a few short hours to a week or may involve overnight care for an
extended period of time.

The important purposes of respite is to give family members time and to temporarily
relieve the stress they may experience while providing care for a family member and/or
friend with a disability. This can also help prevent abuse and neglect, while supporting
family unity. Respite care enables families to take vacations or just a few hours of time
off. Respite is often referred to as a gift of time.










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WHO NEEDS RESPITE CARE?

Caregivers may be reluctant to use a respite service. They may even question the
“need” for this type of service. To determine if your family may need respite services ask
yourself the following questions:

• Is it difficult to find temporary care for my family member?

• Does caring for my family member interfere with scheduling appointments or with
personal projects?

• Is it important that my spouse and I enjoy an evening alone together, without the
children?

• Do you think that you would be a better parent if you had a break now and then?

• If I had appropriate care for my family member, would I use the time for a special
activity with my other family members?

• Am I concerned that in the event of a family emergency there is no one I could
trust to care for my loved one?

• Would I feel comfortable having a trained, caring respite provider in my home,
whether it is for an hour, an overnight stay or a vacation?

If you answered yes to several of these questions, you and your family could benefit
from respite care.

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BENEFITS OF RESPITE CARE

In addition to providing direct relief, respite has added benefits for families, including:

Relaxation. Respite gives families peace of mind, helps them relax, and renews their
humor and their energy;

Enjoyment. Respite allows families to enjoy favorite pastimes and pursue new
activities;

Stability. Respite improves the family’s ability to cope with daily responsibilities and
maintain stability during crisis;

Preservation. Respite helps preserve family unit and lessens the pressures that might
lead to divorce, neglect and child abuse;

Involvement. Respite allows families to become involved in community activities and to
feel less isolated;

Time Off. Respite allows families to take that needed vacation, spend time together and
time alone;

Enrichment. Respite makes it possible for family members to establish individual
identities and enrich their own growth and development.








Ref. – U.S. Department of Justice
Civil Rights Division
Disability Rights Section

National Information Center for Children and Youth with Disabilities
http://www.nichcy.org

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HOW DO I CHOOSE A RESPITE PROGRAM OR PROVIDER?

First, decide if you are interested in caring for your family member with special needs in
your home or in a community setting. Here are lists of factors to consider when deciding
what options are best for your family:

Respite at home:
• Your loved one may be comfortable in your home and would be able to maintain
a regular routine in familiar surroundings.
• If you feel more secure staying at home, you have the option of being in the
house while the respite provider and your family member with special needs are
getting to know each other.
• All of the necessary equipment, medications, food, and toys are within reach of
the respite provider and do not have to be transported to a new location.

Issues to consider if in-home respite is the best option for your family:
• Will you feel comfortable having a respite provider in your home?
• Will in-home services allow you enough of a break?
• Would you like to use your respite time working on household projects that
cannot be completed when attending to your family member with special needs?
• How would you find a respite provider to come to your home?

Respite in the community:
Respite care is provided outside of your home is called community-based respite.
Depending on the resources in your area, the following respite options may be available
to your family:
• Care can be provided in the home of another parent or caregiver who has a
child(ren) with special needs.
• In the home of a neighbor or family member
• Recreational setting
• Summer camp setting
• Registered Family Day Care Homes

Questions to ask yourself if you believe community respite is the best option for
your family:
• Will you be able to leave your family member with special needs in an unfamiliar
place?
• Will they have trouble getting used to a new setting?
• Will you be able to arrange for transportation?
• Will transporting your loved one and all of their equipment, medications, toys and
clothing require so much planning that your respite break will not be worth the
effort?
• Do you feel that your family member will receive sufficient individual attention?
• Do you trust the people who will be caring for your family member?

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FREQUENTLY ASKED QUESTIONS WHEN LOOKING FOR
RESPITE CARE:

• How are care providers screened?

• What is the training and level of experience of the care providers?

• Will care providers need additional training to meet specific family needs?

• How, and by whom, are the care providers supervised?

• What happens during the time the clients are receiving services?

• Are there organized activities?

• How are meals handled?

• Does the program maintain current information about each client’s medical and
other needs? Is there a written care plan?

• Who will administer medications?

• What procedures does the program have for emergencies?

• Do these providers have training in First Aid and CPR?

• Can caregivers meet and interview the people who care for a family member?

• What kinds of services do I need? Long-term, short-term or both?

• Do I prefer services in my home, in an outside setting, or cooperative?

• Will I have to carry additional insurance to cover providers in my home?

• How far ahead of time do caregivers need to call to arrange for services?

• Are caregivers limited to a certain number of hours of services?

• Can I request a specific care provider and have the same person with my child
each time?

• Will the respite care provider care for my other children too?

• Does the program provide transportation?

• What is the cost of services? How is payment arranged?

• Am I able to afford this service?

• If I can’t afford the services are there funds available to assist families?

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POSSIBLE PROVIDER’S RESPONSIBILITY

Anyone with the desire to provide care for someone with special needs can apply to be
a respite care provider. The individual must be at least 18 years old, be literate and
capable of understanding written and oral communication with families/caregivers.
He/she must be able to respond appropriately to emergency situations, possess
physical health, mental health, and good personal character to provide care for special
needs clients.

Providers may also be responsible for:

• Obtaining necessary information about the family.?
• Providing information about yourself to the family.?
• Being dependable, arriving on time and ready to work.?
• Providing reliable, safe and quality services to the family.?
• Maintaining confidentiality about the person being cared for, and? their family.
• If in your home, making sure that it is a safe and healthy? environment.
• Respecting the family values, rules and home environment.?
• Completing paperwork and maintaining any record keeping required? by law, and
the respite program.
• Knowing when to report abuse and neglect of children, adults with? disabilities,
and older adults.

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SAMPLE RESPITE CARE FACT PACKET

Respite care providers must always have as much information as possible about the
consumers with whom they work, in order to be prepared to meet each consumer’s
special needs. A Respite Care Fact Packet is a convenient way for parents or
guardians to supply important information, and for providers to have ready access to
what they need to know.

Name_______________________ School/Vocational
Program_______________
Birth date_____________________
Address______________________________
Teacher/Trainer’s Name__________________________________________________
Address________________________________ Phone_____________________
Parent’s Home Phone_______________
Work Phone______________________
Case Worker’s Name________________________ Phone_____________________
Emergency

Physician’s Name____________________________ Home Phone________________
Office Address______________________________ Office Phone________________
Person that can be called if parents
Can’t be reached____________________________ Home Phone________________
Relationship________________________________ Work Phone ________________
Preferred Hospital_______________________________________________________
Ambulance_____________________________________________________________
Police_________________________________________________________________
Fire Dept.______________________________________________________________
Gas Co._______________________________________________________________
Taxi Service____________________________________________________________
Poison Control__________________________________________________________
Other_________________________________________________________________
Name of Insurance Company______________________________________________
Policy#________________________________________________________________
Name of Insurance Company______________________________________________
Policy#________________________________________________________________

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