"SIBLINGS, RESPITE & HOME SHARING" - AUDREY REILLY, SIOBHAN MCGOLDRICK, AND KIERAN KEON - INTERNATIONAL SHORT BREAK ...

"Siblings, Respite & Home Sharing"

Audrey Reilly, Siobhan McGoldrick, and Kieran Keon

The aims of the 10th ISBA conference are:
• To inspire – by sharing experiences of short breaks and their impact
  from around the world
• To explore – in particular the opportunities for developing flexible,
  personalised short breaks
• To challenge – by reflecting on attitudes towards risk and how we
  balance this with delivering more choice and control
• To strengthen international friendships – through learning together,
  and by developing our shared vision for short breaks

The Significance of Home Sharing as a
Family Based Respite Model for People
     with Intellectual Disabilities –
An Exploratory Study of the Experiences
     of Families & Social Workers

             Siobhan Mc Goldrick, MA Social Work
                          Ability West
          International Short Break Conference 2016

Objectives of this study…
  1. Why is home-sharing        2. What does home-sharing
   chosen specifically by       provide for service users &
 families as a form of short    their family - in contrast to
       break respite?           more traditional residential
                                     respite services?

    3. What challenges do
 social workers encounter in      4. What can be done to
   their role of facilitating   improve home-sharing as a
   home-sharing breaks?         short break respite option?

How these objectives were achieved
• 9 Participants were interviewed:
    • 6 social workers involved in facilitating home-sharing (SW1-6)
    • 2 mothers and 1 sister of service users using home-sharing
      (FM1-3)

• Some limitations!
• Small group of participants
• Service users not interviewed

1. Why is home-sharing chosen specifically by
       families as a form of short break respite?
Lack of available options:
• Not usually the first considered choice.
Change in Family Circumstances:
• Home-sharing is an option which suits circumstances of many people
  with intellectual disabilities & their families.
Networking Amongst Families:
• This can strongly influence peoples decision to pursue home-sharing
  for their family member.
Consistency:
• Consistent, constant relationship formed between the host family &
  person staying with them.

2. What does home-sharing provide for service users &
     their caregiver/family in contrast to more traditional
                  residential respite services?
Flexibility:                       ‘(Host family) is very flexible, she
• Families enjoy having ability    might give me a day again, or if I
                                   go away for a weekend we could
  to swap home-sharing            arrange something for that either’
  arrangements with their                        (FM1)
  host family if necessary –
  unlikely to occur in            ‘In residential services, you cannot
  residential settings.            do this, because it all depends on
                                    the beds that are being used at
                                            that time’ (SW5)

2. What does home-sharing provide for service users & their caregiver/family in
           contrast to more traditional residential respite services?

Building of Positive
Relationships:                               ‘We’re all friends now. We trust
• Family members highly                       them completely. If there was
  valued the extra support &               anything at all, they would ring me.
  friendship the host family                   And I can ring them’ (FM3)
  provides to them & service
  user.                                    ‘We have a good rapport, we’d text
                                            each other on a regular basis. And
                                             she would let me know how my
                                                   daughter is’ (FM1).

2. What does home-sharing provide for service users & their caregiver/family
           in contrast to more traditional residential respite services?

Person-centeredness &
choice:                                  ‘The process gets them to do exactly
                                           what they want to do when they
• Service users enjoy going to
                                             visit the host family’ (SW4).
  another family home
  specifically adapted to cater
  for their own specific needs            ‘With home-sharing the guest gets
  & preferences                          undivided attention & choice, which
                                          they may not receive in residential
• Not considered to take place             where there might be conflicting
  in residential respite settings.                interests’ (SW1).

2. What does home-sharing provide for service users & their caregiver/family in
            contrast to more traditional residential respite services?
Community Integration:
• Spontaneous opportunities to              ‘With a host family they might get to go
  access & develop friendships              out to the cinema or a cousin’s birthday
  within communities.                       party, these are arrangements that just
                                             wouldn’t happen in a structured model
• Service users feel greater                      of residential respite’ (SW1)
  autonomy with a family & not
  accompanied by staff/other
  service users.                            ‘He has a better social life than I do! He

• Raises awareness of disability              goes to everything they go to, they
                                              include him as one of them’ (FM3)
  within community.

3. What challenges do social workers encounter in their role of
                 facilitating home-sharing breaks?

Inadequate staffing        ‘An increase in staff would mean an increase in
                          potential host families, which would mean more
                             home-sharing placements for people’ (SW3).

Intense workload            ‘There is always a bit of catching up to do…it
                           would be nice to get on top of the work’ (SW1)

                          ‘We need more resources to ensure we provide a
Resources                   baseline of services that offer robust forms of
                                    training & placements’ (SW4)

However…it’s not all negative!
 ‘It’s really nice work.
                                              ‘It’s one of the nicest areas
 You get to do different
                                                of social work. You’re
   things & meet new
                                               meeting such positive &
  people, & setting up
                                              amazing people every day’
positive placements can
                                                        (SW4)
be very rewarding’ (SW1)

                 ‘I thoroughly enjoy working here &
                     I hope it expands… it’s a really
                    positive area to work in’ (SW3).

4. What can be done to improve home-sharing as a
              short break respite option?

• Additional allocated funding

• Increase public awareness of what home-sharing is

• Standardisation of home-sharing services as a fully
  recognised, supported model of service provision in
  Ireland.

To Conclude…

• Home-sharing promotes specific interests of service users &
  power of exercising choice.
• Home-sharing is flexible & establishes strong relationships with
  others within communities.
• Range of service options & choice is necessary to suit different
  needs/interests throughout life. Home-sharing could be
  considered as a potential primary respite option, amongst a range
  of suitable alternatives, for service users to choose from.

What about Siblings
 Families with children who have intellectual disabilities are just like other
families: however they are thrust into a situation that makes their lives very
                different” (Seilgman and Darling 2007:1-4).

 Having a child with disability in the family affects every family member,
                            including siblings.
     Most children adjust pretty well to having siblings with disability.
                                                              Audrey Reilly 09/2016

What research says:
• Having a child with an intellectual disability may present multiple challenges for families. It
  may have implications on how families cope and adapt.

• Similarly the quality of family relationships is an important factor for adjustment.

• Koller et al (1992), concurred by Gibson (1995:1201), “coping with a physically or
  intellectually disabled child is a highly individual process, and evidence suggests that some
  families never adjust fully to this event”.

• Bicknell (1983), and Ditchfield (1994), suggest that family members may go through the
  following stages of the bereavement process, shock, grief, pain, sleeplessness, acceptance,
  adjustment, helping others. Therefore weakening or strengthening family functioning

Stages of Coping
• Vetere (1993), suggest that families experience life cycles including the
  diagnosis, potentially the child’s failure to reach its milestones at the
  expected time, educational decisions, sexual education particularly
  around the puberty stage, whether residential care is required, planning
  for the future when the main carer becomes unable to cope, future family
  pregnancies, the possible deterioration or death of the person with the
  disability.

• He suggests it is of great importance to study the coping strategies of
  families during these milestones, particularly when they may not be
  reached at the expected time or perhaps not at all.

Stages of Coping
• Miller et al (1992), believe that the parents’ perceived prognosis about the child’s disability,
  and the amount of care that this will require may be due to over protection from the care
  giver, and their coping strategies, and this unfortunately may result in the child with the
  disability been viewed as a burden.

• Grant and Whittell (2000), categorized coping strategies into life-stages the following findings
  were outlined. Parents of pre-school age children had less confidence in their coping skills
  whilst parents of school age children had developed strategies to cope, largely due to having
  regular routines. Older parents proved to be resigned to their role of caring; however, they felt
  that they should have been more assertive when their child was younger.

Resilience of Siblings acc. To Literature
• Sibling relationships are usually the longest and most enduring of family relationships
  according to Seligman and Darling (2007). They further suggest that an area of research and
  concern is the effect on an sibling of having sibling with and an intellectual disability. In
  addition, they say that siblings who share in the anticipation of the extraordinary event of the
  birth of a child with disabilities also share in the pain and grief attached.

• Meyer and Vadasy (2008), view Siblings of children with disability as having amazing
  resilience. They have similar experiences as their parents but are often on the side-lines.

• Hames (2007), found that very young children tend to copy behaviours of their less able sibling
  with intellectual disability.

Resilience of Siblings acc. To Literature
• Children over seven years, Hames (2007), reported, were more cautious about who to tell
  about their sibling and some were afraid of being targeted by their peers because of their able
  sibling. At pre- teen age they were less sensitive, they were mixing more, involved in
  discussions with their peers and thinking about their future lives.

• Hames (2007), suggests that there is little research available with regard to what level of
  understanding siblings actually possess of their sibling with an intellectual disability. She has
  sourced literature that would concur with this from Boland (2000), Dyson (1999)

• Lardieri et al (2000) and Taylor et al (2001), all suggest that factors influencing the
  understanding of siblings include the information they have been given about the disability,
  behavioural difficulties displayed combined with the intellectual disability and psychological
  resources available to the family

Some Feelings Siblings may Experience
• Children express their feelings in different ways. When they experience negative feelings,
  siblings may behave in unacceptable ways to get attention, or they may withdraw altogether.

Helping Siblings Manage
• The more family members learn and understand about their sibling, the easier it will be for
  them to accept him or her.
• Once a parent is confident of the diagnosis of their child, family members should be informed.
  Explanations should be simple should be simple with questions answered honestly.

• Teach your children how to handle embarrassing situations.
• Be aware of the needs of all your children; for example, each child should have time alone with
  you.

Some Feelings Siblings may Experience
• Help the whole family look at the child with a disability as another important member of the
  family. The child is not a disabled child, but a child with a disability—he or she is a child first.
• Family members should familiarise themselves with the service/school their sibling attends.
• Give them room to be children. Sometimes you won’t like to hear the feelings they express and
  sometimes you may forget that many children go through periods of negative feelings toward
  each other as part of the growing process.
• Look at things from their point of view. Remember how accepted you wanted to be when you
  were their age.

To support a positive outcome
• Itzkowitz(1991) Suggest some positive actions:
• Treat the child without the disability as a child and not as an adult carer
• Do not expect unrealistic responsibilities from a child who is unprepared
• Ask them how they feel, Encourage expression of feelings openly
• Provide siblings with choices and involve them in decision making if it involves them
• Offer them as much information as they require to understand the disability

Relationship Sibling v Sibling
Reliant on how strong the bond is between the siblings and how it develops though life(as any sibling
relationship would develop)

Concerns of siblings according to Meyer and Vadasy (1994)

Guilt (Am I to blame , why them and not me)
Embarrassed (of how they appear and behave, no friends calling)
Fear(is this disability contagious)
Anger/Jealousy( amount of attention been given to sib with I.D.)
Isolation(Am I the only one who feels like this)
Pressure(I must exceed in school and sports to make up for my brother/sister)
Caring(why should I have to do it, I have plans)
Information(What is I D all about)
Future(am I expected to look after my brother/sister when mum and Dad are no longer able)

Things that can affect how siblings of
children with a disability think, feel and
behave.
Age: /An older child will have a better understanding
Younger children may be more worried about themselves
Younger children take it in their stride , they have never known anything different
Severity of Disability can be difficult
Medical Care needs: Does the family routine have to adjust to support the child
with the disability

Parents adjustment: How the parent adjusts to having a child and how their own
relationship is affected can have an influence on the children's wellbeing.

Siblings Perspective
• Did anyone ever explain to you what your sibling’s disability is?

• Research would indicate varied views of siblings even within the same families

• What does this syndrome mean?
• Again the answers differed between siblings within the same family.

• Varied views among siblings can be found regarding coping with a sibling with an intellectual
  disability.

• Siblings express difficulty in relation to the display of behaviours that challenge of their
  brother/sister.

Research shows that ;
                                Conclusion
• Families can be shattered by the diagnosis that their child had an intellectual disability

• Stages of acceptance and adaptation differed with each individual.

• It is not always apparent whether parents have gone through the process of mourning
  the loss of their longed for normal child in order to accept their child with intellectual
  disability as argued by Solnit and Stark (1961).

Siblings’ Perceptions
• Siblings have some recollection of being informed by their parents that something was
   amiss with their sibling with the disability.
• Research shows that siblings were well aware of the difficulties presented for their
   parents having a child with intellectual disability.
• Evidence would show that parents have put their own lives “on hold” to allow them
   to devote their time to caring for their child. This finding in research highlights the
   amount of time devoted by parents to meet the needs of the child with the diagnosis.
• Finally Support for Siblings requires further work

Thank You
• Audrey Reilly
• Brothers of Charity Galway, Ireland
• Ma. In Family Support

Developments with Home Sharing
              & Short Breaks in Ireland
• Foundation of the National Home Sharing & Short Breaks Network (NHSN)
  in Ireland in 2003.
• Lobbying and Best Practice Group. Shared Vision.
• 2012 – Working Group Report on Home Sharing
• 2014 – ‘Home Share Galway’ launch Good Practice Guidelines
• 2015 – GP Guidelines endorsed & adopted by members of the NHSN
• Bi annual conferences and workshops
• 2016 – National Expert Group set up in partnership with the HSE to
  develop best practice (National Standards), a clear strategy and national
  standardisation of Home Sharing services. To identify where resources are
  to be spent.

• Future of the National Home Sharing Network in Ireland?
• Dissolution of Networks in other countries – UK & Australia
• Why?
• Shelf life?

Pobal Funding 2016
• National Lead based in Ability West for the development of the NHSN
  in Ireland
• Preparation for HIQA
• National Standards
• Website