Options for Older Families Program

Planning for the Future, Finding Separate Identities

Presented By: Janine Edwards June 2010

OFOFP

Options For Older Families Program (OFOFP) is a family focused program established in July 1995, funded by the Department of Human Services. The aim of the program is to provide support and case management to primary carers who are over 60 years of age and provide care for an adult person with an intellectual, physical and/or sensory disability at home.

A Services Coordinator (SC) also known as a case manager assists both the family and the person with a disability in planning for the future.

Key Themes

• Challenge of planning • Longevity of relationship • Mutual dependency• Trust• Relationship

Key Characteristics of ‘Older Families’

• Often amongst most marginalized groups in society;• Often living in poverty reliant on benefits to enable their caring role;• Often providing care and support for 50-60 years;• Often the care/carer role is mutually dependent;• Often the person with the disability increasingly assumes a caring role

of their ageing relative;• Both parties live in fear of what will happen when the other is no longer

around;• Often have had poor past experiences with the service system;• Lack of support due to services only providing short term interventions.

Julie’s Story

A Family Response to Disability

• Private, insular, isolated.• Family responsibility, Julie is supported at home. Doesn’t leave family

unit.• Total dependency between mother and daughter.• Culturally, mother provides for all Julie’s care requirements.• No separate or external identity for Julie.• Family/friends know Julie through mother.• Both stay within the home environment.

• Protected from the community/fearful

Julie didn’t attend any educational setting, or receive services or support for the first 34 years of her life.

• Unquestioned total responsibility of carer

All physical, spiritual, emotional and cultural needs met by role of mother/carer.

• Dreams for a safe future

Their daughter, sister to always be safe and well cared for.

Julie’s Family

Frank78yrs

Maria78yrs

Joe51yrs

Tony 48yrs

Mario36yrs

Julie43yrs

Susie45yrs

Mapping the Ten Year Partnership

1997…

…Complimenting Not Replacing

Building Trust

• OFOFP, Family Services Coordinator commences the planning partnership.

• Providing consistency.• Longevity in relationships by program (10 year) to date;• Build on/compliment role of carer.• Culturally specific, family sensitive planning and supports.

(eg. mum unable to continue to massage daughter daily, masseuse, a grief counsellor visits home weekly)

The Team…

• A culturally and linguistically specific worker.• Use of interpreters as defined by family.• All female, mature aged, experienced support team.• Acknowledgement and support to use alternative therapies/remedies.

1997 -Julie’s Networks

GP

Family

Naturopath

Julie

1999…

…Enriching Life

• New experiences, outside of the family

Hydro therapy and a music group weekly. Mum doesn’t come.

• Being known by others

Julie’s support team are a Feldenkrais practitioner, a support worker, a speech pathologist, a masseuse/grief counsellor, her Family Services Coordinator and for the first time ever Julie met others with disabilities who also enjoy music.

Julie’s Feldenkrais Sessions at Home

• Demonstrating possibilities

Julie attended a respite house for 3 hours every third week to meet new people and to experience others caring for her.

• Active grieving

Julie’s support team photograph her out and about. Julie has never had a photo of herself before. Her brother said “we are not a photo family”. Her photo sits on the TV. Her mum cried when she received the framed photograph.

Therapy Supports

Julie at her weekly hydrotherapy session with Ann (right) her carer of 10 years and Orlena

At the hydro pool

2001…

…Dangers of Going too Fast

Pace of Planning

• Needs to meet both carer and person needs

• Discuss options not action(Eg. discussed the idea of long term community based accommodation for the future)

• Possibilities can be perceived as threatening the relationshipParticipation in group meal at local respite facility had no context for mum.“She could feed her daughter”.

• Not being heard and valued can be interpreted as fearEg. Her mother refused to allow her to attend respite when Julie is menstruating.

• Maintaining cultural role of “caring & protecting” Julie doesn’t go for walks around the street as her mother is concerned she will catch a cold.Julie’s mother says “Julie doesn’t like wind”.

2003…

…Replicating Mothers Care

• Known established care team supporting the movement & changeSupport worker of 5 years provides support and training to Villa Maria workers at the transitional accommodation house where Julie stays 2 days per week. She also continues to support Julie in her ongoing community activities

• Mothers acknowledgement of realityJulie’s mother is scared about the future care of her daughter. She knows that the family are unable to for fill this role in the future. She acknowledges that the transitional house gives her a break. The grief counsellor/masseuse visits Julie’s mother while she attends the transitional house.

• Ageing & health deterioration

• In home family supports to assist both Julie and mum.

• Aged services activated to meet mothers needs.

2005…

…Separate Identities

Julie’s transitions to her Own Home

• Personalised needs and equipment outside of the family home

• Julie establishes her own local GP

• Julie’s mother too ill to continue to provide careIt’s too difficult emotionally for Julie’s mother to visit her, to see her live some where else

Julie’s mum received a video & photographs of her on her birthday at her new home

Julie at her new house on her birthday with her dad

2007…

…Our Own Lives

Separate Care and Support Needs

• Their own social connections

• Different interestsJulie has friends at her music group, the residential unit, hydrotherapy, her local neighbourhood and her new sensory program. Her mother is supported by others at the nursing home and both are visited by family and friends.

Mum resides in a nursing home and Julie lives in the community.

2007 –Julie’s Networks

Julie

Family

Villa Mariaresidential

community

Sensory programhydro

GP

OFOFP

friends

Recreation

Changing Days

Julie, supported by her worker of 9 years travels 45 minutes across town every fortnight to visit her mother in her nursing home. It has been emotionally too difficult for Julie’s mother to visit her in her new home. She receives pictures of her daughter participating in her life activities.

Villa Maria’s transitional respite house Julie visiting her mother at the nursing home

Julie with some of her family

Consent was provided by Julie’s family and all agencies participating in her life plan.

Key Issues for Older Families

Key Issues for Older Families

• To Be knownRegular consistent workers

• Information About services that are local

• Links One central place of contact to get information and support

• Awareness Workers/services to appreciate the pressures, be non judgmental, value the parent/carers expertise

and work in partnership

A model of support forward

Partnerships

• A partnership approach ~whole of community, whole of government (State Disability Plan 2002-2012)

• Key engagement points across the community sector eg. HACC, GPs Community Health Services

Program Development

• Enables “Older families” to drive their own futures

• A model that honors and enables the timely process of future planning

• Validating the sensitivity of issues

• Uniqueness of families stories and lives

• A system to map unmet needs of “Older Families” to enable strategic

planning

• Proactive approach to prevent crisis

• Flexible model of support acknowledging both family centered and

person centered practice

Training

• Training that acknowledges the uniqueness of the interconnectedness of life long relationships

• Build on existing bodies of expertise both locally and overseas

The Way Forward

A system of service and support that is both useful and of

value to ‘Older Families’ in the challenge of meeting their

collective and individual needs in planning for the future.

In honor of Maria25 Feb 1929 – 8 Jul 2007

The Planning Book

“What to think about......”

Thank You