Successful Partnerships

1. Successful Partnerships Families and Disability Support Workers

2. Family involvement in care of residents Older residents in group homes have different levels of family involvement. Some may not have any close relatives involved in their care; others have limited family involvement, while yet others have siblings or ageing parents who are very involved in their life. Parents, siblings and other relatives support and care for older relatives living in a group home in many ways. For example, they take them to medical appointments and stay with them for part or all of the time they are in hospital. They organise family outings and holidays. They provide transport and advocate or negotiate on a relative’s behalf.

3. Building partnerships between family members and group home staff Staff and family members need to discuss openly the ways in which family members want to be involved and how a sharing arrangement can work. This reduces the possibility of overlap, confusion and the likelihood that ‘territorial’ issues will arise. Joint discussions are needed about where and under what circumstances support roles can or may be shared; residents preferences too should be considered wherever possible. Recent research shows that residential services use various ways of facilitating communication between families and group home staff, such as organising regular meetings with family members, encouraging families to visit and be involved in aspects of day to day activities in residences, having family days, organising occasional outside expert speakers, and asking family members to complete a questionnaire about how they want to be involved. There may already be existing protocols or policies about family/ agency partnerships. If this is the case then they should be made available to family members so that the expectations are clear to everyone.

4. Information sharing between family and group home staff The level of involvement of family members will vary. For this reason they need to make clear to group home staff under what circumstances they want to be advised about changes to their relative’s health or circumstances . Families involvement in the life of the resident changes temporarily or permanently for all sorts of reasons. Research suggests that as siblings take over from parents the role they adopt tends to be different and less hands-on. Despite this, many siblings will play a major role in the life of their disabled brother or sister and want to be kept informed. Likewise group home staff want to know about major changes to the family’s situation. This knowledge will assist staff in their planning and care of the resident. Both staff and family members may be unclear about how much they should communicate with each other and how much information they should pass on. Each party needs to discuss with the other how information sharing might work. Guessing can only lead to misunderstandings. Group home staff, residents and family members can form partnerships that result in improved care-giving and decision making for the disabled person.

5. Building trust between family members and group home staff Establishing trust is the key to solving problems together and this works best if it is based on mutual respect and an ability to hear the other’s concerns. It helps if both parties can establish some common aims and recognise that both have different skills and knowledge that can be complementary. Disability service staff and family members have been described as having both ‘distinct and overlapping’ roles (Bigby and Fyffe 2011). Families have unique and valuable knowledge about their relatives based on lifelong relationships and a shared history. They act as kin keepers by maintaining family connections and family history. Group home staff and others involved in providing services to people with an ID have opportunities to observe and monitor changes in behaviour on a day-to-day basis. Showing genuine respect for each other and the arguments or positions being put forward is a good starting point. Flexibility is the key to finding viable solutions to concerns about residents.

6. Effective communication is the key to a successful partnership Families and staff can help each other understand older residents’ behaviour, needs and wants. They can inform each other about any changes in their health or behaviour. Families often have important background information about their relative that is not on file and would be useful to pass on to group home staff. They will have information about the family history, the relatives’ likes and dislikes, important people in their lives, plus important historical records, photographs and memorabilia. Passing on this information to staff will help them understand and respond to residents more effectively.

7. Sharing health and other information It is really important that people close to older residents share information. For example if a staff member or a relative takes a resident to the GP, it is vital that all bits of information are put together so that the GP has the best chance of diagnosing the problem and seeking to address it. It is also vital that whoever takes a resident to the GP passes on the outcome of the visit to others involved. This means making sure that each has an accurate record of what transpired.

8. Creating understanding: Disseminating policies Family members need to appreciate that disability support workers will not necessarily be familiar with all relevant Government policies or available resources and eligibility criteria and that it may not be easy for them to access them quickly. Disability agencies need to help their staff find out this information and keep them abreast of it by having clear policies and practice guidelines.  Conversely, if staff take time to explain and discuss openly with family members the obligations that disability agencies have under their funding agreements to comply with certain standards of care, families may be more willing to accept how important it is for them to share information about their relative’s health.

9. Partners in problem solving Families, staff, residents, health and social care providers can often solve problems best in a group. Often each person knows something different about the individual, and has different techniques and resources that can solve a problem. The best decisions are often made in partnership with others. All those involved in the care of residents need to focus on what is best for the resident, then work together to figure out how to achieve the goal, or something close to the goal. Together, they can ensure that everyone involved has a clear understanding of the issues and decisions that need to be made and have a shared understanding about what is likely to be best for the older person.

10. Difficult problems sometimes require quick decisions Difficult problems, such as rapidly declining health, may push staff and families to make decisions quickly. This often results in stress for the people involved and a state of panic. Examples include decisions to move a resident to aged care, to change the group home where the resident currently resides and decisions about invasive medical treatment.

11. Tips for challenging situations Understand that everyone might be feeling stressed about the situation, which explains possible anger and frustration that can affect how people communicate. If possible, postpone making decisions until everyone is calm and has had time to evaluate and explore the options. Suggesting an emergency meeting of the key people involved in an older resident’s life, in order to clearly define and understand the problem/s and discuss multiple solutions, can be a positive move. Evaluate each solution as a group. Make sure that the resident’s opinion is sought whenever possible. Ask experts such as the Aged Care Assessment Team, the resident’s GP, or a dementia specialist to help before decisions are finalised. Explore as many options as possible and see if there is a short term solution that will give more time to find other alternatives.

12. About the presenter Professor Ruth Webber is a researcher at Australian Catholic University 115 Victoria Parade Fitzroy  3065 Australia Ruth.Webber@acu.edu.au