The following contributions are from the participants who attended the Palmerston North Community forum on Saturday 13 June 2009.
Issues related to ageing and people with disabilities
- How we can influence future planning?
- Secure the +65 funding
- Encouraging brothers and sisters to have further involvement
- Local national level
- Good knowledge
- Stronger advocate(s)
- We need to know what we want
- Service user to remain in their own homes (home for life) options
- Remain with peers
- Over-all support
- To strongly advocate
- Combined national voice
- Actual collective voice
- Prioritise – get issues for our older people on the Advocacy agenda
- Consider Retirement villages options
- Workforce development and training for the different and specific skills needed
- Career path – shifting between disability and aged care
- Need to build new cross-sector relationships i.e increasing complex health needs
- Funding model for families
- Current service models do not fit all e.g. contract boarding is a hard option when needs increase
- Participation/inclusion
- Access to a range of health supports
- Aged care policy / political input
- Aged related disorders
- Training: National Certificates
- Career paths (NZQA) Framework
- Need funding for active programmes
- Greater demand for Personalised self directed services.
- What could a great ‘every day’ look like?
- Inclusion of person in anything they do
- Rising later in am - flexible
- Help look after the home
- Cooking
- Housework
- Gardening
- Individual conversations daily - one to one time
- Continuing education
- Stability
- Stimulation
- Daily help with health needs
- Support in finances
- Fitness of mind and body
- Outings and entertainment
- Family orientated
- Change in diet/health accommodated where they are
- Cleanliness.
- How will we understand and respond to changing health needs?
- Have representation on each DHB Advisory Committee (working level)
- Have representatives with MDH at high level – IHC know what to ask for etc...
- Annual free health checks – cardiac, dental etc...
- Compulsory meetings with family to discuss progress of resident
- Preventative health checks annually for people with diabetes etc...
- Dietician
- Feet, eyes etc...
- Keeping healthy
- Cost effective.
IHC Associations
Furthered the discussion on sharing what activities and ideas were working well for associations and identifying what help/assistance associations need.
There was confirmation that there was a need for a handbook for associations to provide guidance.
- What Activities and Ideas are Working Well for Associations?
- Fish n Chip night – inviting people to discuss or hear about issues ( Many interesting variations possible on this theme – pizza nights, barbecues )
- Have a “movie month” – One association funded movie tickets so individuals could go to the movies as they chose over the selected “movie month”. Arrangements made with movie theatre prior
- Have a 10 pin bowling night
- Have association meetings that target issues or things of community interest – NASC, ORRS Funding
- Have less structure in meetings so creative ideas can flow
- Fund youth groups for social opportunities, targeting 12 – 24 year olds
- Fund gym, aquatic centre or other sports membership subs. From time to time special deals are available on membership subs
- Focus on a project e.g. working with Regional Council on better access to recreational facilities in community
- Try lunch meetings
- Have resource evenings and get information out to people
- Send newsletters out to all Community Facilities i.e. doctor, Plunket, schools, libraries, schools, information centres
- Organise dance parties (in one area a local band regularly invites the association to have their dance party on the band’s Sunday afternoon practice session. Another organisation donates the use of their hall as the venue – free music , free venue – loads of fun)
- Publicly acknowledge and honour positive contributions by members and staff using newsletters or at events
- Seek feedback and input from families on what they want to have happen locally (One association reported on the facilitated informal goal setting meeting they had)
- Focus on encouraging and finding and supporting strategies that bring in new members – information evenings, running sibling or grandparent events, wine and cheese evening
- Associations need to put some time and focus on working with other groups e.g. Parent to Parent, CCS, Down Syndrome Association, Special Olympics
- Trailing new approaches such as employing recreational workers/activities people in collaboration with services
- Keeping membership and family lists up to date and keeping people informed is an important role for associations
- Celebrate special occasions. One association is holding a celebration of 60 years of IHC in the community with a “Come dressed as your favourite singer“ afternoon - DJ, music and food.
- What Assistance/Help do Associations Need?
- Financial statements and advice that is up to date and correct
- Respond immediately to update requests for membership details
- Provide information for the process of AGMs
- Information on how and where to access information required – names and contact details – is particularly important for new Association Chairs
- Have facilities for childcare/ activity programmes at the Community Forums and other events
- Associations do need some guidelines on how to manage their relationships with services
- IDEA Services could create more opportunities for associations to market themselves and promote their activities to families of service users
- Support for new Association Chairs – eg Induction session, buddy up with an experienced Chairperson.
Positive Parent Advocacy - Parents Role in Keeping the Family Healthy and Emotionally Engaged
- What does Parental Advocacy mean?
Firstly it means finding or creating ‘champions’ for the family member with an intellectual disability who are willing to see beyond the challenges to the person ‘within’.
Parents must hone their skills to create a network of willing supporters who will lighten the burden they face with the relentless complex needs of their child.
“‘Your children get only one childhood – surround them with people who are going to lift them higher” - Oprah Winfrey
As parents try to meet their child’s needs, they will feel that the battle never ends and in some ways that will be true.
But to achieve some wins or successful outcomes, there must be co-operation and collaboration with ‘important others’. If parents demand what their child should get lawfully they will only get compliance and nothing more.
The addition to the family of a disabled person will create many unique feelings for all the family members. Since there are no right feelings which must or should be felt in any situation, these feelings will be mostly individual and often unpredictable.
It is amazing how well young siblings will understand and accept, if they are included in both the intellectual and emotional content of family problems.
“My world actually doesn’t have a child with special needs in it – it only has children, and all my children have needs.”
- Feedback
We are seeking simple gems of advice from experienced parents and family members on how to remain healthy and connected as a family after having a child with a disability. |