- Keenan, Michael, et al. Applied behaviour analysis and autism: Building a future together. Jessica Kingsley Publishers (2006).
- Robertson, Janet, et al. The impact of Person-Centred planning. Institute for Health Research, Lancaster University (2005).
- Sanderson, Helen, Jeanette Thompson, and Jackie Kilbane. "The emergence of person-centred planning as evidence-based practice." Journal of Integrated Care (2006).
- Bureau of Developmental Disabilities Services. Service Definitions and Standards Manual. Bureau of Developmental Disabilities Services, USA (2006).
- 2nd Enabling Masterplan Steering Committee, 2nd Enabling Masterplan 2012 – 2016 (2012), p. 811.
- Stoner, Julia B., Maureen E. Angell, Jennifer J. House, and Stacey Jones Bock. "Transitions: Perspectives from parents of young children with autism spectrum disorder (ASD)." Journal of Developmental and Physical Disabilities 19, no. 1 (2007): 23-39.
- Cobb, R. Brian, and Morgen Alwell. "Transition planning/coordinating interventions for youth with disabilities: A systematic review." Career Development for Exceptional Individuals 32, no. 2 (2009): 70-81.
- Cummings, Rhoda, Cleborne D. Maddux, and Jack Casey. "Individualized transition planning for students with learning disabilities." The Career Development Quarterly 49, no. 1 (2000): 60-72.
- Wei, Xin, Mary Wagner, Laura Hudson, Jennifer W. Yu, and Harold Javitz. "The effect of transition planning participation and goal-setting on college enrollment among youth with autism spectrum disorders." Remedial and Special Education 37, no. 1 (2016): 3-14.
- AS Mentoring website (accessed 17 Aug 2020)
- Autism Education Trust, Person-Centred Planning (2014), p. 2.
- A Health Passport is a booklet containing important information about a person, such as their personal details, their medical history and communication abilities. The Health Passport stays with the individual and should be brought along to all medical visits to ensure that their voices and wishes are made known to the healthcare professionals. With that information, staff can better provide integrated and person-centred care.
Introduction
For many families of children on the spectrum, receiving the news that their child has been diagnosed with autism, which is a lifelong developmental disability, is a difficult experience. Parents often report mixed feelings – on one hand, they are relieved to know that their concerns about their child were valid; on the other hand, the diagnosis brings with it more questions than answers: What is my child’s future going to be like? Will the child be able to fit in with his or her peers and in society? Where do we go from here?
It is critical that these families receive support from the very start.
Parents may need help to process and manage their feelings about the diagnosis. Moreover, they will need to begin the process of planning for their child immediately. Early intervention has to commence as soon as possible in order for it to be effective. Otherwise, it will severely disadvantage children with disabilities and their families later on. [1]
As every person on the spectrum is unique, the planning process cannot follow a pre-determined structure. Instead, it should always place the specific individual at the centre of the planning process, with plans that are tailored to their specific needs.
Family, caregivers and a multi-disciplinary team of professionals should be included as partners in the planning process. This process is called Person-Centred Planning (PCP) and has been demonstrated to lead to an increase in positive life experiences and outcomes. [2], [3] Several different PCP approaches have been developed, such as Essential Lifestyle Planning, MAPs, and PATH, among others. Regardless of the approach used, it is important that these plans are regularly reviewed, e.g., at least once a year. [4]
In addition, such planning becomes even more critical at key transition points. Transitions are “points of change in services, and in the personnel and organisations that coordinate and provide services to children and families.” [5] Transitions are often difficult for individuals on the spectrum because they are often accompanied by unpredictability, which can cause confusion and anxiety. [6] With person-focused planning, transition outcomes for youths with disabilities are often improved. [7], [8], [9]
Current Situation
| Summary of Current Situation | |
|---|---|
| Current Provisions | Gaps |
|
|
At present, families with newly diagnosed children on the spectrum at KK Women’s and Children’s Hospital (KKH) receive preliminary support from their Autism Resource nurses. These nurses follow up with parents by telephone to support them in their journey into acquiring intervention services for their children. KKH also jointly organises a Next Steps workshop with SG Enable to provide families with information on early intervention programmes, as well as community/peer support services available in Singapore.
Dr. Lim Hong Huay, a caregiver to three children of whom two are on the spectrum, has been working on setting up a caregiver support service model in Singapore. The proposed pilot project, named “Project 3i”, aims to connect, enable, and empower special needs caregivers, build an inclusive community for special needs families, as well as to transform innovative caregiving solutions.
In 2019, SG Enable launched the Enabling Guide, which is an online portal aggregating information and advice on schemes, services, supports and resources related to disability in Singapore.
To enable students to transition smoothly between services, institutions or organisations, MOE has also rolled out a structured Transition Planning process in all SPED schools (see Figure 5 for an infographic depicting stages of the transition planning process).
Life planning and transition support programmes are otherwise provided by organisations such as the following:
- Rainbow Centre’s Family Life Services (FLS) unit provides person-centred care planning and service coordination for their beneficiaries.
- Autism Support Programme developed by ARC(S) & Temasek Cares provides transition support for their graduate alumni entering Institutes of Higher Learning (IHL) by linking up their secondary school teachers with staff in their Junior Colleges, Polytechnics and Institutes of Technological Education (ITE).
- The Institute of Mental Health (IMH) conducts a small-scale programme for students on the spectrum who enter polytechnics each year.
As it currently stands, there is no coordinated system of planning across the lifespan for each person on the spectrum. Individual organisations can only do what they think is best for their students or clients at any point of time, and within the constraints of their resources or services.
In addition, young adults on the spectrum report being “on their own” after graduation from IHLs. They perceive there to be few avenues to seek help or advice, and there is low awareness of services available. These barriers result in the lack of timely access to the right services and support.
Recommendations
The following are some recommendations for this high priority area.
The introduction of lifelong case management for persons on the spectrum would help to ensure comprehensive and coordinated planning and care across the lifespan for those who would require it, especially individuals who have moderate to high support needs. Such case management can fall on a continuum from self-help, where family members take on the role of case managers, to outsourced paid help, where the identified case manager may be a trusted mentor. AS Mentoring in the UK, [10] which provides mentoring and employment support to persons on the spectrum, may be a useful reference point for the latter.
The key role of case managers is to provide continuity by journeying with the individual on the spectrum and the family members throughout their lives. As such, they would need to be equipped to provide support in forward planning and in identifying services to meet the needs of the individuals and their families. As the person on the spectrum grows older, the case manager can also increasingly take on the role of a life coach, supporting them in areas such as decision-making and self-advocacy.
The approach to case management should also be a person-centred one. Person-centred planning (PCP) is the process of life planning for an individual, taking into account their views, their aspirations, their strengths, their preferences, their areas of difficulty and related support strategies/systems at each stage of their lives. [11]
As mentioned earlier, engaging in regular life planning, especially with the use of PCP, has positive outcomes for persons with disabilities. It is thus recommended that regular life planning, with the use of PCP approaches, is conducted through the lifespan for persons on the spectrum.
A curated collection of templates should also be made available to support the planning process in different areas of life, e.g., Individual Education Plans (IEPs), Individual Transition Plans (ITPs) and Health Passports. [12] In addition, this planning should occur for all persons on the spectrum, regardless of their level of support needs. For example, similar to the planning that occurs for students on the spectrum in SPED schools, students on the spectrum in the mainstream schools would also benefit from yearly individualised education plans (IEP) and/or individualised transition plans (ITP) in the areas of both academic and non-academic skills in order to ensure that they are adequately prepared for work and living as adults.