Good morning ladies & gentlemen. We come from HK. Today, we are going to present the topic on User Participation in Rehabilitation– Parent’s role & contribution in Enhancing Service Quality & advocating Policy Changes. We’ll use story telling format to present how parent’s participation in different ways in an agency, then to the community. I am Becky, the Executive Director of Fu Hong Society. The one sit next to me is Illya, elder sister of a service user. We are the two story tellers of this topic.
FHS is an NGO providing services to persons with psychiatric / intellectual disabilities and special needs for almost 40 years in HK. We’re serving about 3,600+ users with about 1000+ full-time staff plus some part time staff and volunteers. We’re receiving about 85% subvention from the Social Welfare Department. Since most of our PWD are severe grade ID persons, therefore their parents/family members will speak for them. Illya, a user’s sister, is a family member who I know for over 20 years, is going to present how user participation is done within Fu Hong Society and the community.
My name is Illya and I am the sister of Sik Yan. She is now a very petite grey haired, feisty woman who has a mind of a one year old and who loves the smell of perfume. Any perfume. She also loves shoes. New shoes. I find myself buying her a new pair almost every other month because I love to see her smile. In early 80’s, parents were passive recipients, only joined unit based social activities, listen & accept whatever were arranged for their family members –users. In late 80’s to 2000’s, parents joined unit based parents groups, then agency’s Parent Association and their activites/ training. Later step out to the society to participate in various social issues & advocating for policy changes from the government
Parents understand and know best of the users’ needs. Parent representatives are invited to join the unit based working group to oversee and help with the service quality, safety and meal service. Some parents joined the unit’s sibling group and parents group. Parents can also joined the agency level’s Fu Hong Parents Association (at present has about 450 members). Fu Hong Society holds open and positive attitude and encourages parents to play an active role in various levels of operation and management through the Fu Hong Parents Association. Parent representatives joined agency’s committees as Conveners/members of Regional Sub-committee, Service Monitoring Committee and Public Relations Committee. Even a parent representative has become one of the members of the Board of Directors, the highest governing body in the agency.
For community level, a parent of FHS initiated to appeal to government in 1980’s and succeed in obtaining cash assistance for users as a single case upon admission to a hostel (this greatly release parent’s burden to pay for their expenses in a hostel) The voices from parents were answered in various ways. The government forked out a good portion of finance to hire 7 additional employees in every care & attention home (over 21% increase of the total manpower in each home) and gave an increase of $1 for the daily rate incentive payment to all workmates, which is about 5% increase. However, the increase is really encouraging as a kind of motivation and recognition of the users’ contributions. In the workshop Submission of rehabilitation related position papers to government (eg. For the HK Rehabilitation Programme Plan) also showed parents’concern & readiness to voice out their opinionand to be heard by the policy makers.
In 2007, FHS parents joined hands with other community group to form an “Alliance for Subvented Residential Care Service”to advocate for improved resources & facilities/ policy changes in residential care services. In recent years, actions taken are advocating for legislature reform on services for elderly and persons with disabilities. Asking law making bodies to address the needs of aged service users and the long waiting list for subvented residential services.
Through concerted efforts from over 30 user organizations, a communication platform with direct dialogue between the Alliance and Government is formed and held regular meetings since July 2016. Issues and concerns are discussed and well received by Government officials and Legislative Councilors. As a whole, the combined efforts from Government, agency staff and full supports from parents can really bring good quality services to our users.
Here, I would like to introduce Mr Lam Lai-shing, the one with red circle. He’s the chair of L centre’s parents group, member & ex-chairman of Fu Hong Parents Association. He joined the Alliance and was an active member since 2007. He became the vice-convener and convener alternately in the past 4 years. He led the Alliance in organizing a number of petitions. He represented the Alliance to appeal to and negotiate with the government for more resources, better services and improve policies for the welfare of our users.
These are some of the examples of the Alliance’s petitions. The purpose is to seek assistance for the increase of more residential placements and shortening the waiting list; to appeal cash allowances for caregivers, to increase manpower and resources for the up keeping of the NGO’s services . Upon Alliance appeal, government launches the public transport concession scheme of $2 for each single journey for elderly over 65 years old and PWDs. Government also approved cash subsidey of $5,000 to PWDs and actively considering provision of $2,000 to care givers under some criteria.
After learning what & how parents participation was, let me outline some of it’s outcomes :- For parents helping users – as parents understand most of the needs of their own family members (that is the users), they speak for them, give comment or advice to service units on their service operation including safety, meal., service quality etc. which help to improve users’ quality of life. For parents helping parents – thro’ participation, parents know more about other parents’ needs, they can render assistance or visits to those needy parents, mutual support was then gained. With more understanding on unit’s operation and agency’s work, it helped to build up mutual trust among all. In case of any accident or misunderstanding happened, parents can be the mediators, can voice out their opinions, e.g. In some 10 years ago , when I was the centre-in-charge of L Centre, a complaint against my work to SWD was received at L Centre, I was accused of doing some wrong things to L Centre. Because of well established mutual trust & understanding , parents group immediately wrote a letter, signed by over 30 parents, to the government to back up my work performance and objected the accusation. I was so impressed and felt grateful to the parents’trust & assistance to me. With increasing understanding on agency’s work, parent representatives of various Committees & members of FHPA did give their comments, voice out the users’ needs and even acted as ambassadors of the agency. They helped to introduce & promote agency’s work and to build up good agency image. Parents also involved actively in agency’s fund raising activities such as Flag Day, Walkathon for non-subvented services. As we just learned from Illya’s illustration, some parent representatives, like Lam Lai-shing, are actively taking part in outside activities, especially the Alliance’s appeal & petitions as mentioned in the previous ppts.
What are the key success factors in parents’ participation? In my opinion, there’re at least 5 areas, such as : The clear vision & belief in user participation It’s crucial to show recognition & acceptance of parents as important stakeholders Agency needs to be open-minded & willing to collaborate with parents, to respect their view To have more open & friendly communications among various parent groups & individual parents. Timely and appropriate feedback are also essential. It’s also important to be honest to admit or disclose faults, if happened, and to share important information to parents as far as possible.
1. Rome was not built in one day so is trust and faith. Parents need to have trust, faith & understanding on what agency is doing and can provide. 2. Parents would like users to have a normal and independent lifestyle, however, we accept users restraints and limitations in service provision. 3. Parents helping parents / users, even other than their own children and siblings. Parents willingness to be volunteers to help in fund raising activities, take users out for social activities such as outings, dinings & visits etc. Hospital visits to sick parents and users, bring users back home to see their elderly parents. The willingness to contribute their knowledge, expertise and time is just noble! 4. We all believe the importance of partnership in service planning & delivery 5. Have belief in synergy creation & continuous service improvement.
In the past 30 years, parents work in various levels have proved to be a good & successful examples of users participation. As we can see throughout the years, from parents only concern their own users to agnecy’s other users, then to those needy users in the community. Fu Hong Society really set a very good example!! Let me summarize it in 4 areas. Voice of parents: it has great impact, especially in recent years, parents’s voice are heard & louder to appeal for users’ need for more appropriate service s & resources. Parents participation has became higher and higher – due to increased communication among parent groups within agency and community groups, more understanding & support gained. Formation of the Alliance also helped parents to advocate more for the rights of PWD & more resources for service provision. With more knowledge about agency & community service, parents are more ready to contribute & be involved in different levels of work. As a service provider, we have a stronger belief in user participation & would like to appeal all NGOs & the community to believe the importance & power of user participation.
RIWC_PARA_A089 Parent Partnerships with NGOs
User Participation in Rehabilitation -
Parents’ Role & Contribution
in Enhancing Service Quality & Advocating Policy Changes
Ms Becky Luk, Executive Director
Mrs Illya Chan, User’s sister
Fu Hong Society
Development of Parent Participation
• An NGO serving persons with disabilities in Hong Kong
• Service users :3,600+
• Staff: 1000+
• Finance: 85% subvented by Government
participation & advocacy
Parent Participation in Practice
•Unit based Parents Group
•Unit based: Working Group on Service
Quality / Safety / Meal Service
• Fu Hong Parents Association
• Regional Management Sub-
• Service Monitoring Committee
• Public Relations Committee
• Board of Director
Parent Participation in Practice
• Fu Hong Society
• Self-application of cash assistance
• Increase of manpower for Care & Attention Home
• Increase in incentive payment for sheltered
work shop users
• Provision of visiting medical practitioner service
• Submission of rehabilitation related position
papers to Government
Parent Participation in Practice
• Alliance for Subvented Residential
• Constituted by over 30 user organizations
• Advocating for service improvement for the
elderly and people with disabilities
• Established a communication platform between
Alliance and Government
Mr. Lam, an active parent representative
of Fu Hong Society
Outcome of Parent Participation
Key Success Factors
• Clear vision & belief in user participation
• Recognition & acceptance of parents as important stakeholder
• Open-mindedness & willingness to respect views from parents
• Open communications with timely & appropriate feedback
• Honesty in disclosing faults & sharing information
Key Success Factors
• Trust & faith in services provided by agency
• Acceptance of restraints & limitations
• Willingness to contribute time and expertise
• Belief in partnership in service planning & delivery
• Belief in synergy creation & continuous improvement
Louder & more impactfulVoice of parents
Parents participation From communication to advocating
Parents’ changes More knowledgeable & ready to contribute
Agency belief Stronger belief in user participation