Nova Scotia Respite Guide - A Guide for Caregivers of Children and Adults With Disabilities Nova Scotia Respite Partnership - Government of Nova ...
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Nova Scotia Respite Guide A Guide for Caregivers of Children and Adults With Disabilities Nova Scotia Respite Partnership
Nova Scotia Respite Guide A Guide for Caregivers of Children and Adults With Disabilities
2 NOVA SCOTIA RESPITE GUIDE
Is This Guide for You?
This guide was developed for Definitions
caregivers of children and adults
who have disabilities that affect Children/Adult children with
development, physical ability and/or disabilities or chronic illnesses
mental health. Refers to children, youth and adults
with disabilities or chronic illnesses,
As a caregiver your time is valuable including but not limited to, autism
and limited. This guide is intended to spectrum disorder, Down syndrome,
provide an easy-to-follow map. It will developmental delays, behavioural
guide you through the process of: difficulties, deafness, blindness,
• discovering the role respite medical or technological needs or
could play in your family any other special challenge.
• how to apply for respite funding Families
• ways to recruit and hire respite Inclusive of biological or adoptive
providers parent(s) and caregivers, siblings,
and extended or foster family
• sharing the care of your loved one members.
This guide will help you navigate a Caregivers/Family caregivers
course towards meeting the needs Parents or guardians who have
of your family member. the ongoing daily responsibility for
This guide is for parents and delivering and managing the care
caregivers of child and adults with and support provided at home and
disabilities who are thinking about in the community.
adding respite into their lives. The Respite providers/Volunteers
guide provides information on respite The paid or unpaid individuals who
opportunities in Nova Scotia. Not all provide services to support family
of the information in this guide will caregivers in taking a break from
apply to every family. their care giving role by providing
support for children/adult children
6th printing — May 2018
to engage in social, recreational,
cultural or life-skill activities.NOVA SCOTIA RESPITE GUIDE 3
Using This Guide
This guide is divided into four
sections that will help you and your
family locate the respite supports
most appropriate for your situation. Role of
1. What is respite? This section Respite
defines respite and explores
how it can benefit you,
your family member with
a developmental disability, Finding
physical disability, and/or Respite
mental illness, and your Support
family as a whole.
2. How do I find and fund respite Respite
support? This section explores Planning
formal and informal respite
supports and provides a path
to obtaining both types of
respite supports. Respite
Orientation
3. Planning for respite supports.
4. Providing orientation, oversight
and follow-up with the respite
provider.
Role of
Respite
Finding
Respite
SupportRole of Respite
6 NOVA SCOTIA RESPITE GUIDE
What is Respite?
Family respite can take many
forms. It can be going for a walk,
meeting a friend for coffee, or
taking a few hours to clean the Role of
Respite
house while the person you care for
engages in a recreational or social
activity. It can be a weekend away
for your child/adult with a skilled
respite provider.
Finding
It can help you spend time with Respite
older or younger siblings while Support
your child/adult is hanging out
(with support) in another part of
the house. Or, it can also be time Respite
for you and your partner to do Planning
something fun!
Respite
Orientation
Role of
Respite
Finding
Respite
SupportNOVA SCOTIA RESPITE GUIDE 7
Respite is support
for the whole family
Having respite as part of family life
gives family members (caregivers
and care receivers) time to do the
“Respite should
things they want and need to do. be more than a
Respite allows caregivers to make
time for themselves and for their break from life’s
other family members. Regular circumstances,
respite can give family members
time to take care of their health, it should be a
pursue hobbies, meet up with
friends, rest, or do the housework!
change of life’s
Respite should also be a positive circumstances”
time for your loved one to develop
(Hutchinson et al., 2010)
relationships and the opportunity
to engage in social and leisure
activities, and do something
enjoyable in the community. Respite Learning about respite options
is about creating positive time for and finding the ones that work
yourself, your loved one, and other best for you and your family’s
family members and contributes to needs are normal milestones for
the overall well-being of the family. families caring for a loved one
with special needs. Some families
are able to find and fund respite,
others recruit volunteers or join
family co-operatives, but the reality
is that most families struggle to
fund respite and seek assistance
through government programs
(e.g., Direct Family Support for
Children, Flex Program, and
Continuing Care).8 NOVA SCOTIA RESPITE GUIDE
Respite Benefits Us All!
Don’t forget that respite has a
beneficial effect for everyone. When “I was very tired, physically, mentally
we went across the province we and emotionally. I knew I needed
asked parents about their respite a bit of a break … I thought in the
experiences. The following is one back of my mind that I don’t think
parent’s reply to “How did you know anybody can give the kind of care
that you needed Respite?” to my son that he should have. I
soon discovered that was not the
truth. I was not allowing my son to
expand his world. I probably thought
that I was his world, and that I would
always be his world. It was equally
“Quality respite is as important for him to have new
experiences with other people away
not only required, from me, as well as it was for me
it is a necessity for to have the same away from him.”
the caregiver and
the person with
exceptional needs.”
(Hutchinson et al., 2010)NOVA SCOTIA RESPITE GUIDE 9
Finding Respite Support
12 NOVA SCOTIA RESPITE GUIDE
Finding and Funding
Respite Support
Informal Respite
Informal respite is provided through Role of
Role of family, friends, neighbours and
others in your community. This
Respite
Respite is usually not paid work. These
supports may be a neighbour
watching your child/adult while
you take a walk around the block
Finding
ng or a neighbourhood group which Respite
te
ort
welcomes your family member. Support
Sometimes informal support
can develop when parents pool
their resources to create a respite
Respite Respite
Planning
solution. For example, some Planning
parents create co-op programs
with other families. A co-op can
allow one set of parents a night out
te while their child/adults is looked Respite
tion Orientation
after by other parents in the co-op.
It can also offer a helpful support
system for parents.
You might consider your local
municipal recreation service or
other local organization. Ask how
they include children/adult with
disabilities into their programs.
As a start, there are a number of
organizations listed at the back
of this guide.
Role of Role of
Respite Respite
ng Finding
te Respite
ort SupportNOVA SCOTIA RESPITE GUIDE 13
Formal Respite
Formal respite involves hiring Formal respite often has age
respite providers to work inside criteria. Some programs serve
or outside of your home. Some children/youth under 19 years of
families may have their own funds age, others serve those over 19
or have health care coverage to years of age, and others serve all
pay for respite services but others ages. Formal respite may include
may need to seek external funding funding, personnel who work in your
for respite. There are also grant home or out-of-home respite in a
opportunities through charities facility. See below for an overview.
that may be helpful.
Name of Program Service Age of family Contact
member
DCS - Disability Support Funding for All Ages novascotia.ca/coms/
Program – Flex respite. disabilities/index.html
Individualized Funding
& Direct Family
Support for Children
DHW Continuing Care Funding 19 years novascotia.ca/dhw/ccs/
Program: Caregiver ($400/month) and older caregiver-benefit.asp
Benefit
Respite Coordinators Finds Respite Under 19 years See Respite Coordinators
Support Workers list provided in this later
for those who in this Guide.
have funding
DHW Continuing Respite Service All Ages novascotia.ca/dhw/ccs/
Care Program: 1-800-225- 7225
Home Support
DHW Continuing Care Respite Service All Ages novascotia.ca/dhw/ccs/
Program: Facility Based
1-800-225- 7225
Respite Care
DCS = Department of Community Services; DHW = Department of Health and Wellness14 NOVA SCOTIA RESPITE GUIDE
Funding for All Ages Funding for those aged
19 years and older
The Direct Family Support for Caregiver Benefit:
Children Program (DFSC) and
the Flex Individualized Funding The Nova Scotia Department of
Program, are operated by the Health and Wellness, Continuing
Department of Community Services Care Program offers the Caregiver
(DCS). The amount of funding is Benefit. The Caregiver Benefit
based on the degree to which the recognizes the important role
disability impacts the individual of caregivers in their efforts to
and the family. The funding may be assist loved ones and friends.
prorated or reduced based on family The program is intended for
income. It’s important to note that caregivers of low income adults
the eligibility criteria are different who have a high level of disability,
for children than for youth/adults. as determined by a Home Care
Please refer to eligibility criteria assessment. If the caregiver and
for these programs listed later in the care recipient both qualify
this guide. More information can for the program, the caregiver
be found on line at: novascotia.ca/ will receive $400 per month.
coms/disabilities or by contacting For more information, please
the Department of Community go to: novascotia.ca/dhw/ccs/
Services office or by calling 211. FactSheets/Caregiver-Benefit.pdfNOVA SCOTIA RESPITE GUIDE 15
Finding a Respite Provider
Once you have secured funding, you Several regions have a respite
will need to find a respite provider. For apartment available to families
youth aged 19 year and under, there within the program. The availability
is a respite coordination service in of the apartment is on a first come,
all regions of the province, and each first served basis. The apartment
region has a Respite Coordinator who is not staffed so the parents/
manages the service. guardians are expected to provide
a respite provider when using the
Respite Coordinators help families apartment, however, there is no
access respite providers and plan cost for use of the apartment
respite care for family members. They itself. The apartment can be
screen and refer respite providers. booked by calling the Respite
Screening includes: an interview, Coordinator in your region or for
police and/or RCMP criminal record Central Region call Support Service
check, Child Abuse Registry check Group (902-466-0230).
and three other references.
Region of NS Respite Coordinators Contact
Northern Northern Region Respite Services 902-752-9452
(NRRS) nrrs@hcrsweb.ca
Western Yarmouth Association for 902-742-9258
Community Residential Options respite@yacro.com
Central Autism Nova Scotia 902-446-4995
respiteservices@autismns.ca
Central Support Services Group ssgns.ca
Cooperative (apartment) 902-466-0230
Cape Breton Cape Breton 902-539-6685
Community Respite autismres@ns.sympatico.ca16 NOVA SCOTIA RESPITE GUIDE
Department of Health and
Wellness (DHW), Continuing
Care for All Ages
Although the Respite Coordinator Home Support:
screens and refers respite
providers, parents/guardians are Another option for formal respite
ultimately responsible for choosing is the DHW’s, Home Care Program.
their provider. The parent/ guardian This program provides personal
interviews and decides if a respite support services to people with
provider is the most suitable ongoing care needs, either on a
to provide care. Once a family short-term or long-term basis. A
has decided, it is the family’s range of personal care, respite
responsibility to provide training to and home support services are
the respite provider on their child/ available. Personal care services
adult’s specific needs. Families are help the client with daily living
also responsible to pay their respite tasks, such as dressing/undressing,
providers directly, and to make bathing, toilet use, feeding, and
bookings for specific times. help with mobility. Home Support
Services also help the client with
The Flex Program also offers up to tasks, such as light housekeeping,
60 days of annual residential respite laundry, and meal preparation. In-
in licensed homes. See Section home respite services for caregivers
12 of the DSP policy: novascotia. are available. There may be a cost,
ca/coms/disabilities/documents/ depending on your income. For a
SPD_Public_Policy.pdf complete description, please see
novascotia.ca/dhw/ccs.
You can apply by calling toll-free
1-800-225- 7225.NOVA SCOTIA RESPITE GUIDE 17
Finding a Respite
Provider – Conducting
Your Own Search
Facility-Based Respite Care: Caregivers must be actively
involved in searching for and hiring
To support family caregivers respite providers.
and their families, the DHW helps
caregivers by providing access There are several ways to find a
to respite beds for their loved respite provider. First, talk to everyone
ones in licensed long-term care you know. Word of mouth is often
facilities (nursing homes) across the best way to find possible respite
the province. There are also options providers.
available for children.
Post ads in community places,
A person may stay in a licensed such as:
respite bed for up to a total • Faith communities, libraries,
of 60 days within a calendar and schools.
year. However, to ensure fair
access to the beds during the • Vocational Agencies
high demand periods (July 1 (see directionscouncil.org/
to October 1), no more than 30 MemberAgencies),
days can be scheduled. You can • Residential agencies (nsraa.ca),
apply for a respite bed by calling • Colleges (e.g., Nova Scotia
toll- free 1-800-225- 7225. A Community Colleges, NSCC)
Care Coordinator will assess the
applicant’s care needs and eligibility. • University departments
Once the applicant is confirmed (e.g., nursing, education, child
to be eligible for the service, the study, psychology, social work,
Care Coordinator will arrange for a speech language pathology,
respite bed for the applicant on occupational therapy, or
a first-come, first-served basis. physiotherapy)
Some families have found respite
providers using the internet
(e.g., emailing their social network
or Kijiji.ca).
Think outside the box!
Don’t limit yourself by what is
currently offered.18 NOVA SCOTIA RESPITE GUIDE
Be sure to include basic information Naturally, families often worry
in the ad – that they will be working about the quality of care their child
with an individual with disabilities, or adult may receive while they
the number of hours, and any special are absent. Families may worry
skills you are looking for. A sample whether the respite provider can
ad may look like this: handle any emergencies that come
up or manage behavioural issues
or other challenges that may
Job Opportunity
present themselves.
Peer/Support Worker
These are realistic concerns. In
To Provide Companionship, Support,
and Community Inclusion for a order to take advantage of respite,
23-year-old Man with Cerebral Palsy you must feel comfortable and
confident in your respite provider.
Qualifications: In order to feel comfortable, it is
An undergraduate degree in any care important that the respite provider
field, or equivalent combination of
education, training, and experience in is the right fit for your family.
the field of disabilities. Self-motivated, For additional information, see
excellent interpersonal skills, and good Respite Providers: Screening and
communication skills, both oral and Interviewing on page 24.
written, are essential.
Role:
• Plan meaningful recreation and Emergency Respite
leisure opportunities.
• Provide peer and buddy support. In some instances, short term
emergency respite care can be
• Assist in planning and carrying out
life skills and recreational activities arranged. Emergencies may include
• Record keeping – daily activities any situation in which the primary
and organize respite receipts. caregiver may not be able to care
Approximately 11 hrs/week (this is for the child/adult in the family
negotiable and a combination of daytime home. Consider contacting your
and evening hours), at $_____ /hr. Disability Support Program Care
For more information regarding Coordinator or Continuing Care
the position, please contact: Coordinator for more information.
Your Name
Email or Phone NumberRespite Planning
Orientation
22 NOVA SCOTIA RESPITE GUIDE
Planning Respite
With Your Family
Your respite plan will depend on
your family’s needs as well as what
is available in your community. This Role of
will help you decide which type of Respite
respite will work best for you. For
example, if your respite goal is for
your loved one to be involved in the Finding
community and you to be at home
Respite
Support
then out-of-home respite might be
your best choice.
The process of understanding the
reasons for respite will also help you
plan how to use your respite time.
Respite
1. Start with listing the reasons
Planning
why you and your child/adult
need respite. You may list
activities that are meaningful
for them. It is also valuable to Respite
list activities that help meet Orientation
your practical and emotional
needs. Lastly, expand your
list to various community or
neighbourhood activities that 3. Try putting the needs into a table like
respite could enable your whole the one on the next page. Fill in your
family to participate in. own reasons for respite in order
2. Prioritize the list. For example, of importance and the types of
which reason is number 1 for activities that best suit your child/
respite? You may not meet all adult. Determine how often you and
your respite needs, but this will your child/adult need respite, and
make sure the most important the length of time required. Then
needs are handled first. add up the total amount of respite
time. Don’t forget to include the
type of respite that will best meet
each respite need.Reason for Respite Activity for How Often? Length of Time Total Amount Type of Respite
Child/adult (In/Out of Home)
Planning Respite Time
NOVA SCOTIA RESPITE GUIDE
2324 NOVA SCOTIA RESPITE GUIDE
Respite Providers:
Screening and Interviewing
What do you do once you have Prior to and during the interview
replies to your advertisement or consider:
have received resumés from the
Service Provider? Start with a 1. Have a family member, friend
telephone call. The call should be a or someone you trust at the
brief conversation to see if you want interview with you. They can
to have a full interview with this act as support and a second
person. You can ask some questions pair of ears and eyes.
to see if they might be suitable. Do 2. Ask for a copy of the
they have experience? How long candidate’s resumé.
have they worked in the field? If the
telephone call goes well, ask them 3. Write out interview questions
to come for an interview. You can before hand, for example, Ask
meet them in your home or in a the candidate to describe
public place (e.g., coffee shop). You themselves and their interests.
may have to interview several people You will get a better sense of
to find someone to best suit your who they are and what skills
family member’s and family’s needs. they may have which could
benefit your family member.
Before the interview, take a moment
to create a list of duties or a job • Ask about the candidate’s
description for the position. background and training. Try
The list may include things like to use open-ended questions
communication skills, personal care, so they have an opportunity
behaviour management plans or the to talk. Avoid questions
amount of experience with persons which are easily answered
with disabilities in the community. with a yes or no—you will get
less information.NOVA SCOTIA RESPITE GUIDE 25
• Ask about the experiences closely with your family in your
he/she may have that will home, and for safety reasons
fit the needs of your family. you need to be very thorough.
You need to ask questions
which reflect your situation. 5. Confidentiality should be a
How would they handle requirement of the position.
challenging behaviour? Whoever you hire, have them
Do they have experience sign an agreement about
with personal care? Try confidentiality. A sample
to be very clear about the confidentiality agreement is
expected duties in the job. provided on page 38.
• Ask the candidate what 6. Discuss the wage you are
their expectations for the offering for the position.
job duties are.
7. Take notes during the interview
• Ask about their ideas for
so you can remember what
activities – this can show
was said.
how creative and energetic
they may be. At the end of the interview, ask
• What is their work availability? the candidate to think about the
How flexible are they? position and call them to confirm
Can they be available for their interest. This gives time for
emergencies? you and the candidate to consider
the arrangement.
• Talk about transportation.
Do they have a car or will If the interview goes well, and the
they use the bus? references are good, you should
schedule a trial run with the
4. Ask for three references. This
candidate. Ask them to come and
is very important. Call each
spend time with both you and your
reference and talk to past
family. See how well she/he fits
employers. Ask for a Criminal
with your family member.
Records Check (the candidate
can get one through the local
Police station for a small fee).
This person will be working26 NOVA SCOTIA RESPITE GUIDE
Expectations
Be clear from the beginning about • Discuss expectations around
the expectations you have for your personal boundaries and
respite provider. Think about: responding to challenging
• Can the respite provider bring behaviour. It is important to
anyone with them – their children explain your approach for
or anyone else? supporting your loved one so your
respite provider can be consistent
• Cell phone use – are there and follow existing rules.
restrictions?
• Make notes about routines,
• Personal vehicle – are you medications, and favourite things
comfortable allowing your family to do. You know the routines
member to be transported in the intimately, but your respite
respite provider’s vehicle? Do you provider does not. They will
require the respite provider to appreciate the support.
have extra car insurance? Who
will pay for gas? Be sure there are A respite provider is usually
appropriate car seats available if self-employed. This means they
they are needed. must keep track of their earnings
• Your house should be found as and report these to the Canada
you left it but the respite provider Revenue Agency. This is not your
is not there to clean the house. responsibility and you would not
Be clear about your house work issue a T4 to the individual.
expectations.Respite Orientation
tion Orientation
30 NOVA SCOTIA RESPITE GUIDE
Respite Orientation
and Follow-up
Orientation
Leaving your child or adult with
Role of Role of
someone new can be stressful.
Respite Respite
Many families provide an
orientation time for the respite
ng provider and the child or adult to Finding
te get to know each other before Respite
ort they are left on their own. You may Support
want to consider starting with
shorter periods of time in a place
where your child/adult is most Respite
Planning
Respite comfortable. Arrange for them to do
an activity that your family member
Planningenjoys. It is important to share their
communication strategies and
every day routines with the worker.
This is a chance to spend some
Respite
te time with the respite provider and Orientation
tion guide him/her on how to interact
with your family member. This may
help you to feel more comfortable
with the respite provider’s abilities
and offers an opportunity for the
respite provider to learn about your
child or adult while you are nearby
to offer advice and support.NOVA SCOTIA RESPITE GUIDE 31
Follow-up
Families should talk to both the Respite Providers: Online Training
respite provider and the child/
adult to make sure everything went There are a few online training
well. Engage the respite provider programs that your potential worker
in a discussion about the respite might complete while they are
experience and encourage him/ learning about your family member.
her to ask questions if there was For example:
something they did not understand. 1. respitecourse.ca
Be sure to provide the respite 2. autismnovascotia.ca
provider with prompt and regular
feedback about their work.
Respite Providers:
Training for your Child/Adult
It is also recommended that you
take some time to talk to your The interviews are over and you
child/adult about their experience. have found a respite provider.
Some questions you might ask: Now what? Anyone who agrees
• Tell me about your time to work with your family should
with_______. What did you do? have a signed agreement outlining
their role, responsibilities and
• Did you like_______?
employment status. Your respite
• Was he/she nice to you? provider may have some experience
• Would you like to spend time with your family member’s
with_______again? particular disability, but they will
not have experience with your
• What did you like best/least?
family member. It is important that
you prepare and train the respite
Some children or adults who cannot provider so that he/ she can work
use verbal communication express effectively with your child/adult.
themselves with behaviour and
Introduce the respite provider to
mood changes. If your child or adult
the needs of your child/adult. You
seems unhappy or is behaving out
might set up a binder for the respite
of character, take this seriously.
provider with information about
Be sure to discuss any concerns
your family member or you could
with the respite provider and/or, if
create a one-page profile.
relevant, your care coordinator.32 NOVA SCOTIA RESPITE GUIDE
All About Me!
• Include a picture. List his/her • Explain your child/adult’s
name, age, siblings’ names, communication system.
school attending, and any Can they communicate
programs your family member verbally or do they use another
attends. communication system?
• Talk about your child/adult’s (e.g., sign language, Picture
personality. Talk about his/her Exchange Communication
abilities and needs. This is a great System (PECS), visual strategies,
way to introduce your child or assistive technology).
adult to the respite provider. • List any medications your child
• List activities your child/adult or adult is taking.
enjoys and does not enjoy. What • Make sure the respite provider
does a successful activity or day understands where medications
look like? are kept and when they should be
• Give the respite provider key administered. Create a log to fill
strategies you use to help prevent in when medications are given.
outbursts or upsets in your child/ This will act as a record and way
adult. There may be a strategy or to be sure medications have been
words/phrases you use to calm a given. Be sure the medications
stressful situation. are kept in a safe place.
• List people your family member • List any assistive devices used.
likes to be with. List those people • List any personal care needed.
he/she does not like to be with. • Be very honest with your respite
provider. They need good
information to be a good support.NOVA SCOTIA RESPITE GUIDE 33
• Train the respite provider The following website provides
to understand your family information on how to complete
member’s non-verbal clues (body a one-page profile, which includes
language & facial expression) to most of the information outlined
understand when he/she might above in a one-page format:
be happy, sad, or anxious. Your helensandersonassociates.co.uk.
youth/adult might show their
emotions in different ways. Check out samples of All About Me!
guides on the Nova Scotia Respite
• What is the backup plan if a Partnership’s webpage:
difficult situation develops? https://www.respiteservices.com/
If a situation does escalate, what app/media/4839.
steps should the respite provider
take? Who should he/she call,
and when?
• Set up an information binder. You
may not see the respite provider
before or after their time with
your family member. You can jot
down any items you feel he/she
needs to know for their shift, and
they can share information about
their experiences during the shift
with you.34 NOVA SCOTIA RESPITE GUIDE
Safety Considerations
Even in the most well organized and If the child or adult is mobile, are
well planned settings, safety may there objects around which might
be an issue. Some tips to consider: limit his/her mobility? Can these
• Make sure the respite provider is be moved?
aware of any allergies or special • Sometimes there may be
dietary requirements your family behaviour outbursts. It is
member has. important to stay calm in
• Make sure they are careful with stressful situations. Often these
hot drinks or foods. This can are the situations where someone
lower the risk of burns. could get hurt. A good strategy to
• Train respite providers to use is keeping your voice low and
do a quick scan of any new movements slow. If someone is
environment to be certain it is a agitated or upset, a loud voice or
safe spot for your child/adult. For quick movement may increase
example, when arriving at a park, their agitation. Staying calm and
do a quick check of the area for slowing everything down can
glass or other dangerous objects. help to diffuse the situation. Be
How easy is it to manipulate a sure the respite provider knows
wheelchair? the strategies used to manage an
outburst, and has a backup plan.
It is important to give as much
information to your respite provider
as you can, but remember that it
will take some practice before the
she/he will become comfortable in
his/her role. Work with your respite
provider to help them gradually
understand your loved one, and
your family’s routines and lifestyle.NOVA SCOTIA RESPITE GUIDE 35
Respite Providers:
Developing the Relationship
The respite provider is hired and As you develop a comfortable
trained. You hope they will work relationship with your respite
well with your family and for a long provider, there may be a temptation
time. How will you foster a positive for you to share problems with
relationship? them. It is wise not to follow this
temptation. Share information
which is important to your child/
The respite provider as friend adult, but do not go beyond that.
It is important to define the
boundaries with your respite Payment
provider(s). They will be coming
into your home and personal life You have hired the respite provider to
to work with your child/adult. They do a job. The respite provider has a
may share meals or other personal right to expect payment on a regular
times with your family. However, basis. Arrange the payment system/
the respite provider is there on a schedule with the respite provider
professional level. They are present from the beginning and stick with
as a contracted employee to do a job. it. If you agree to pay the respite
They may become very fond of your provider at the end of the shift, or on
child/adult and your family and you a weekly basis, be sure to pay them
of them. Where do you draw the line? on time. Respite providers have their
own financial commitments and will
Be friendly. It is natural to chat appreciate receiving payment when
with people, to find out about them it is promised. Remember that any
and their lives. Show concern and time spent in receiving updates from
interest for their life situations, but your respite provider at the end of
stay away from any direct personal their shift is still paid time and they
involvement with their problems. should be compensated accordingly.36 NOVA SCOTIA RESPITE GUIDE
Ending the Relationship
Meetings Happy Endings
Arrange a regular meeting time with One of the realities of life is that
your respite provider. This may be a it will change. Eventually, your
check-in type of meeting to see how family situation or your respite
things are going. Review any plans provider’s situation may change,
you have established to see if they and it will be time for her/him to
need to be tweaked. Talk about any move on. Although saying good-
ideas for new or different activities. bye is difficult, there may be ways
to make it easier. Ask if he/she
Give feedback to your respite would be willing to help train the
provider. Talk about any issues or new staff person. This may make
problems which have come up. the transition easier for your family.
It is better to deal with potential If the respite provider is staying in
problems early so they do not your community, ask if they would
become bigger. Be sure to highlight be willing to fill in as an emergency
successes. Everyone likes to hear caregiver, or would like to drop in
that things are going well. Let her/ for visits with your family. Here is
him know how much they are a time to build a friendship without
appreciated and what this respite the restrictions of the employer/
time means to you and your employee relationship.
family. Your respite provider will
gain tremendous job satisfaction
knowing his/her work is making a Not So Happy Endings
difference to your lives.
The respite provider you carefully
interviewed, screened and trained
is not working out. Perhaps you
have noticed problems in the way
the respite provider does the job.
The first approach would be to work
with the staff person to try and
resolve the problems.NOVA SCOTIA RESPITE GUIDE 37
Here is the process you can follow to resolve problems
with your respite provider:
• Arrange a private meeting with • If the respite provider is unable
the respite provider. or unwilling to make the
necessary changes, you should
• Describe the problem(s). give him/her notice that he/she
Be clear and direct. Tell the will be let go from the job and
respite provider what you move on. Be honest, be clear
have observed and why this is and be firm with your worker.
causing concern.
If you see or are informed of
• Do you have a written job dangerous behaviour on the part
description or agreement? of your respite provider, suspend
Discuss the problem in him/her immediately. If you
reference to the original suspect neglect or abuse, contact:
job expectations.
Your local Child or Adult
• Be certain the respite provider Protection Services
understands the issues and (numbers are online under
is prepared to change his/her DCS or call 211 for assistance
behaviour. locating the contact information).
• Set a time period for the respite
provider to make changes in his/
her job performance.
• If necessary, have a third party
help with the situation. Perhaps
the respite provider needs a
coach or mentor for a time, to
help work effectively with your
youth/adult.38 NOVA SCOTIA RESPITE GUIDE
Sample Confidentiality Agreement
1. I understand that during the course of my duties as a respite provider
with _____________ I will have access to information about this person
and their family.
2. I understand that any such information is strictly confidential and
I agree that I will not use or share this information with anyone, at
any time, from this day forward, unless:
a) specifically directed by this family, or
b) it is required for the safety of the child/adult in my care.
3. I agree to use caution and take all steps to keep the confidentiality of
such information safe at any time or in any place, and in particular,
when using any type of electronic device or when performing my role
as a respite provider. I will use caution when using social media such
as Facebook, Twitter, etc., so that this person (or family) is not identified.
Signature of Respite Provider:
Signature of Decision Maker:
Date:NOVA SCOTIA RESPITE GUIDE 39
Direct Family Support Eligibility for Direct Family
for Children and Flex Support for Children (DFSC)
Individualized Funding
Program Criteria
Direct Family Support for Children • The family and child are permanent
and the Flex Programs are residents of Nova Scotia;
administered by the Disability • The family and child are lawfully
Support Program within the NS entitled to be in or to remain in
Department of Community Services. Canada;
These programs provide funding
to eligible families to help them • The child is under 19 years of age.
support their family member (both • The child is living in the home of a
children and adults) with a disability family member/guardian;
at home. This funding will allow • The child has been diagnosed
families to hire respite providers by an approved clinician with a
who may have specialized training, disability as defined as:
education or experience related to
the needs of the youth/adult. –– a mild or moderate intellectual
disability with a significant
The Direct Family Support for behavioural challenge that has
Children and Flex Programs may been documented within the
also include Enhanced Family last two years; or
Support (EFS), which provides –– a severe intellectual disability
additional funding to assist families that has been documented
to support their child at home when within the last two years; or
their child’s care and support needs
are considered extremely challenging –– a physical disability with ongoing
and they require comprehensive, functional limitations that are a
highly structured and skilled forms of result of the disability and which
support and intervention. seriously limits their capacity
to perform age appropriate
activities of daily living; or
–– a dual diagnosis consisting of
any of the above.
• The family net income meets the
DFSC Program income guidelines;
• The child’s family agrees to
participate in the assessment
process.40 NOVA SCOTIA RESPITE GUIDE
Direct Family Support for Eligibility for Flex
Children (DFSC) Program Individualized Funding
Income Guidelines (for Adults)
A family’s size and income will To be eligible for the Flex program
determine the amount of funding the application and/or assessment
they will receive. This means process must identify and determine
that the family will be expected that the individual and their family
to contribute a portion of the meet the following criteria:
respite funding depending on the
number of people in the family and • The adult and their family
family’s annual income. You can are permanent residents of
view the Income Guidelines here: Nova Scotia.
novascotia.ca/coms/disabilities/ • The adult is 19 years or over.
DFSCIncomeGuidelines.html • The adult is residing in the home
of a family member or guardian.
• The adult has a medical
diagnosis of one or more of the
following: intellectual disability,
long term mental illness, or
physical disability.
• The adult and family have unmet
needs as identified through the
assessment process.
• The adult meets the financial
eligibility criteria as outlined in
DSP policy and procedures.
• The adult and their family agree
to participate in the assessment
process as outlined in DSP policy
and procedures.NOVA SCOTIA RESPITE GUIDE 41
Enhanced Family Support for
Children Program Criteria
To be eligible for funding under Financial eligibility for the Enhanced
Enhanced Family Support for Family Support for Children funding
Children, the application and/or is subject to the DFSC Income
assessment process must identify Guidelines.
& determine that the child and their
family meet the following criteria: For more information about the
Enhanced Family Support for
• Meet all requirements of the Children program, see novascotia.
DFSC Program ca/coms/disabilities/documents/
• Have extremely challenging care direct_and_enhanced_family_
and support needs that are not support.pdf.
adequately addressed through
their current DFSC funding
• Have care and support needs
that are assessed at, or exceed
an overall range of 3 or 4, as
determined by the Support
Assessment Tool (SAT).
• Require the involvement of
healthcare practitioners from two
or more disciplines
• Require one or more behavioural
supports as outlined in the
Enhanced Family Support for
Children Policy
• Have one or more family
circumstances in evidence as
out- lined in the Enhanced Family
Support for Children Policy42 NOVA SCOTIA RESPITE GUIDE
References Respite-Related Support
Services in Nova Scotia
Canadian Association for Community 211 Nova Scotia
Care (1996) Best Practices in Respite Dial 211, text 21167 or visit ns.211.ca
Services for Children, a Handbook for to find and connect to thousands of
Parents, Ottawa, Ontario. services and programs offered by local
community groups, non-profits and
Canadian Association for Community government departments anywhere in
Living (2008) Real respite for the whole the province.
family: a resource guide for organizing and
delivering a family workshop on respite for
Acadia University SMILE Program –
individuals with an intellectual disability and
Acadia University
their families, Ottawa, Ontario.
Acadia SMILE Program provides persons
Hutchinson, Paula, with Bryson, S., Harvey, with varying disabilities a unique
V., LeBlanc, D., MacRae, A. and McFadyen, physical activity experience in order
S. (2010) Creating Respite Solutions for to improve their total development as
Nova Scotia Families of Children and Adult individuals.
Children with Chronically High Needs.
902-585-1477
Dalhousie University, Halifax, NS.
smile@acadiau.ca
Montana Real Choice Systems Change
(RCSC) Grantee. Relax. Take a Break: Accessibility Directorate
A Family Guide to Respite for Children Responsible for implementing and
in Michigan. administering the new Nova Scotia
Accessibility Act and addressing
broader issues related to disability.
accessibility@novascotia.ca
902-424-8280
1-800-565-8280
TTY 902-424-2667
TTY 1-877-996-9954
Alexander Society for Inclusive Arts
Provides art based educational programs
for children, teens and adults with special
needs. Located in Wolfville, NS.
902-582-3888
alexandersociety.orgNOVA SCOTIA RESPITE GUIDE 43
Art Gallery of Nova Scotia www.autismnovascotia.ca
Dale Sheppard, Curator of Education https://www.facebook.com/
and Public Programs AutismNovaScotia/
artgalleryofnovascotia.ca Autism Nova Scotia Chapters:
902-424-2197
Annapolis Valley Chapter
902-242-2019
Atlantic Youth – Respite CYC
annapolisvalley@autismns.ca
Families with special needs or behavioural http://autismannapolisvalley.ca
concerns can look to Atlantic Youth for https://www.facebook.com/
qualified, reliable and insured staff that AnnapolisValleyChapter
they can depend on to provide much
needed respite care services. Respite CYC Bedford-Sackville Chapter
pairs a professional and experienced Child 902-446-4995
and Youth Care Worker or Developmental bedfordsackville@autismns.ca
Service Worker with families for short http://autismbedfordsackville.ca/
or long term respite. This care can be https://www.facebook.com/
provided in the home, at central locations AutismHalifaxHrm
in the community, or as a recreational or
social activity. Every service arrangement Cumberland County Chapter
is customized around your needs so 902-230-2053
please contact us for more information. cumberlandcounty@autismns.ca
http://www.autismcumberlandcounty.ca/
www.atlanticyouth.ca https://www.facebook.com/
infor@atlanticyouth.ca autismnscumberland/
902-820-1234
Pictou County Chapter
Autism Nova Scotia 1-877-544-4495
pictoucounty@autismns.ca
A community-based organization that
http://www.autismpictoucounty.ca/
fosters understanding, acceptance, and
collaborative approaches for those with South Shore Chapter
Autism Spectrum Disorders throughout 902-541-8233.
Nova Scotia. southshore@autismns.ca
5945 Spring Garden Road http://autismsouthshore.ca/
Halifax, NS B3H 1Y4 https://www.facebook.com/South-
1-877-544-4495 Shore-Chapter-of-Autism-Nova-
902-446-4995 (in Halifax) Scotia-1378686879027918/
info@autismns.ca44 NOVA SCOTIA RESPITE GUIDE
Southwest Nova Chapter Boys and Girls Club
1-877-544-4495 Offers afterschool and summertime
southwestnova@autismns.ca programming for all children and youth.
http://autismsouthwestnova.ca/
https://www.facebook.com/ bgccan.com
SouthWestNovaChapter
Brigadoon Village
Strait Area Chapter
A non-profit recreational facility in
1-877-544-4495
the Annapolis Valley. Offers camp
straitarea@autismns.ca
programming to Atlantic Canadian
http://autismstraitarea.ca/
children and youth who are living with
Truro health conditions and other challenges
1-877-544-4495 902-681-8100
truro@autismns.ca brigadoonvillage.org
http://autismtruro.ca/
https://www.facebook.com/groups/ Camp Tidnish
autismnstrurochapter/
A barrier free sleep away camp designed
to support campers of all ages with
Autism Society of Cape Breton
intellectual and physical disabilities.
Offers information and programs to Located near Amherst, NS.
individuals and families living with
902-453-6000 ext. 227
autism spectrum disorders in the
camptidnish.org
Cape Breton Region.
Robyn Gallant, Program Coordinator Camp Triumph
autismcb@bellaliant.com
An invaluable camp program for children
who have a sibling or parent with a
Bonny Lea Farm
serious chronic illness or disability
Offers residential living, vocational day (age 7 – 17). Located in PEI.
programs and a Greater Achievement
Winter: 902-835-8700
Centre. Located near Chester, NS.
Summer: 902-836-4668
902-275-5622
info@camptriumph.ca
bonnyleafarm.ca
camptriumph.caNOVA SCOTIA RESPITE GUIDE 45
Cape Breton Community Respite Department of Community Services –
Care provided in the child’s home or in the Disability Support Program
one-bedroom respite apartment for the The Disability Support Program (DSP)
families of children with special needs. serves children, youth and adults with
902-539-6685 intellectual disabilities, long-term mental
autismres@ns.sympatico.ca illness and physical disabilities in a
range of community-based, residential
and vocational/day programs.
Caregivers Nova Scotia
1-877-424-1177
Offers information, support and
novascotia.ca/coms/disabilites/index/html
educational workshops to families and
friends who are giving care to someone
with a physical or mental health condition, Department of Health and Wellness –
chronic illness, or who is frail or elderly. Continuing Care
All programs and services are free. Continuing Care Services are provided
1-877-488-7390 to eligible people who need care outside
caregiversns.org/ of the hospital in their home and
community. Care can be provided on a
long or short-term basis.
The Club Inclusion
1-800-225-7225
Offers inclusive social, cultural, and
novascotia.ca/dhw/ccs
recreational programming for people
12 years old and up, including summer
camps and day programming. DIRECTIONS Council for
Vocational Services Society
902-478-1917
alice@theclubinclusion.com Assists and supports member
Jackie@theclubinclusion.com organizations in the delivery of services
theclubinclusion.com that promote the employment and
inclusion of persons with disabilities in
their communities. A complete list of
vocational programs is located on this
website.
directionscouncil.org46 NOVA SCOTIA RESPITE GUIDE
Epilepsy Association of Nova Scotia Highland Community
To provide education and resources to Residential Services
support persons living with epilepsy, Offers residential living and support
their communities and support ongoing for persons with disabilities to live
research. more fully in their community.
902 429 2633 Located in New Glasgow, NS.
1-866-374-5377 902-752-1755
ed@epilepsyns.org hcrsweb.ca
Halifax Association for IWK’s Village News
Community Living (HACL) An electronic newsletter which provides
Offers information, support, and inclusive information regarding upcoming events,
programs to people living with intellectual research, leisure, sports and recreational
disabilities and their families in the activities to inspire participation and
Halifax Region. quality of life.
902-463-4752 902-470-7039
hacl@eastlink.ca
halifaxacl.com IWK Recreational Therapy
Works with families to increase their
Halifax NS Down Syndrome Society awareness of recreation opportunities
A volunteer, non-profit organization which for children/youth with a physical/
acts as a resource to everyone with an developmental disability which are
interest in Down syndrome. matched to their individual needs and
abilities. Collaborates with schools and
Martha Walls (902) 404-2225
community organizations to enhance
optimal participation of children/youth
Halifax Recreation Programs with a disability.
& Activities Catalogue
An assessment process is used to
A resource for service users and providers. match children/youth to adapted
Lists a variety of recreation and service recreation equipment which can be
options for all Nova Scotians. borrowed supporting participation in
halifax.ca/rec/ProgramsandActivities.php biking, swimming, skating, snow/beach
activities, and school activities/class
trips which require adaptation.
902-470-7539
iwk.nshealth.caNOVA SCOTIA RESPITE GUIDE 47
Jordan’s Principle March of Dimes
Ensuring First Nations children receive March of Dimes Canada provides a wide
the public services they need when they range of services to people with physical
need it. Atlantic Canada contact: disabilities throughout the country.
902-402-5355 7071 Bayers Road, Suite 276
Halifax, NS B3L 2C2
L’Arche Communities Tel: 902-444-1090
Fax: 902-444-3692
An international federation of faith-
www.marchofdimes.ca
based communities creating homes
and support networks with people
with intellectual disabilities. Northern Region Respite Services
Regional respite coordinator for
L’Arche Antigonish Northern Nova Scotia
902-863-5000 902-752-9452
director@larcheantigonish.ca nrrs@hcrsweb.ca
larcheantigonish.ca hcrsweb.ca
L’Arche Cape Breton Nova Scotia Association for
902-756-3162 Community Living (NSACL)
larchecb@larchecapebreton.org A province wide, nonprofit organization
larchecapebreton.org working with people with intellectual
disabilities, families, and others leading the
L’Arche Halifax
way to build a just and inclusive society.
902-407-5512
1-844-469-1174 (Toll Free)
office@larchehalifax.org
www.nsacl.ca
larchehalifax.org
L’Arche Homefires
902-542-3520
office@larchehomefires.org
larchehomefires.org48 NOVA SCOTIA RESPITE GUIDE
Nova Scotia Early Childhood Society for the Treatment of Autism
Development Intervention Services Non-profit charity, which develops and
A province wide specialized service for provides community-based treatment,
families of children between birth and education, and residential support services
school entry who have a biological risk to individuals with autism and other
for or have a diagnosis of developmental developmental disorders and their families.
delay. Services are offered in 8 regions 902 567-6441
with 27 locations. autismed@ns.sympatico.ca
1-844-292-6730
nsecdis.ca Special Olympics Halifax
A non-profit organization dedicated to
Nova Scotia Residential providing year-round sports training
Agencies Association and athletic competition in a variety of
A coalition of non-profit residential Olympic-type sports for children and
agencies serving persons with disabilities. adults with an intellectual disability.
The organization strengthens the ability 1-866-299-2019 (Toll Free)
of member agencies to focus on person 902-429-2266
centered service delivery and pursue specialolympicsns.ca
excellence in community-based service.
nsraa.ca Speech and Hearing Association
of Nova Scotia
Nova Scotia Respite Partnership SHANS is the professional association
A group of parents, caregivers and of Speech-Language Pathologists and
professionals working to develop Audiologists of Nova Scotia
strategies to promote the development webmaster@shans.ca
of respite services for children and shans.ca
adults with disabilities, their caregivers
and families.
Yarmouth Association for Community
Visit our Facebook page at Residential Options (YACRO)
www.facebook.com
YACRO is a not-for-profit agency that
provides residential support for children
and adults challenged with disabilities.
902-742-9258
info@yacro.com
yacro.comNOVA SCOTIA RESPITE GUIDE 49
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