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    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

    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

    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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    Family Guide to Respite Care August 2006

RESPITE CAREAN 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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    Family Guide to Respite Care August 2006

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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    Family Guide to Respite Care August 2006

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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    Family Guide to Respite Care August 2006

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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    Family Guide to Respite Care August 2006

    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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    Family Guide to Respite Care August 2006

     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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    Family Guide to Respite Care August 2006

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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    Family Guide to Respite Care August 2006

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