Autism is a condition in the brain that affects a person's ability to communicate, interact with others, etc. While therapies, education and support can improve the condition, there is no known cure for autism. As such, if you are the parent or guardian of an autistic child or adult, you may be concerned with finding the right support for the autistic person in the untimely event of your death.
In this article, we explore various options to care for an autistic person should the primary caregiver passes away.
Note: This article focuses on the care options for an autistic person. If you need more information on professional deputies or other financial and legal-related planning for the autistic child or adult, please speak to Immortalize about estate planning for special needs person.
What is Autism?
Autism, or Autism Spectrum Disorder (“ASD”), refers to a broad range of conditions characterized by challenges with social skills, repetitive behaviors, speech and non-verbal communication.
ASD is a spectrum disorder, which means that how a person with autism learns and thinks can range from highly skilled to severely challenged. Not everyone with ASD requires significant support in their daily lives. Some can live entirely independently.
In the following sections, we look at factors to consider when planning for care for an autistic person after the primary caregiver passes away and the options available for future caregivers.
How to Care for An Autistic Person After I Die?
Overview
The type of care available or suitable for the autistic person after you, the primary caregiver, passes away depends on:
Availability of successors
If there are family members or people whom you trust and are willing to take over the responsibilities of taking care of the autistic child or adult, you can consider home-based care or day care centers to help reduce the burden on such a successor.
Degree of autism
Depending on where in the spectrum the autistic person falls into, the available care options will differ.
Age of the autistic person
Some care options are catered for autistic children while others are for autistic adults.
Affordability
The following charts summarizes the available options.
(*Disclaimer: The charts are for the purpose of giving readers a simplified overview and are estimates on the appropriate help for people with different levels of autism. Ultimately, everything is on a case-by-case basis and caregivers should evaluate their personal needs and enquire with experts accordingly.)
For anyone with Autism below the age of 18
For anyone with autism age 18 and above
We will explore each of these options in turn.
General home-based care for autistic child and adult
These home-based care generally applies not only to autistic child, but also people with other disabilities and elderlies.
Foreign domestic workers and live-in caregivers
Technically speaking, a domestic worker would be a person whom we consider "maid" or "helper" in Singapore employed to do household chores. A live-in caregiver is usually someone who has received nursing or nursing aide training and who's primary duty is to take care of the care recipient and not to do household chores. A live-in caregiver usually costs more than a domestic worker.
If you can afford, setting aside a sum of money to hire a foreign domestic worker or live-in caregiver can be very helpful to the future guardian of your autistic child.
For aids, try:
Foreign Domestic Worker Levy Concession - Allows you to pay the Foreign Domestic Worker (or Migrant Domestic Worker) levy at a concessionary rate of $60 a month, instead of $300. Each household is eligible for up to two of such concessions, caring for two loved ones at any one time.
Home Caregiving Grant - A $200 monthly cash payout to support your loved ones with at least permanent moderate disability, i.e. always require some assistance to perform three or more Activities of Daily Living.
Foreign domestic workers and live-in caregivers (with appropriate training)
Depending on where your child falls on the autism spectrum and the support needed, the foreign domestic worker or caregiver may not be equipped with the necessary skills to properly take care of your child.
Training for the helper may be needed and this cost can potentially be subsidized by the Caregivers Training Grant, a $200 annual subsidy that lets caregivers attend approved courses to better care for their loved ones.
Click here for the list of course available under this grant.
Home-based care services by Social Service Agencies (“SSAs”)
SSAs are non-profit organizations that provide welfare services and/or services that benefit the community at large. Some SSAs provide home care services which involve a staff visiting your home to offer support such as therapy, personal hygiene care, medication reminders, housekeeping and training in daily living skills.
People eligible for such services are aged 16 with physical or intellectual disability as well as mild autism.
Click here for the list of SSAs that offer home-based care services.
Care for autistic person below the age of 18
Just like how the mass majority would send their child to child care and before/after school care, you could also include in your will, instructions and plans to have the future guardian send your autistic child to care centers with special programs.
Related resource: Guide To Making a Will - Singapore Edition
[For recommendations on which lawyer/providers are most suitable to help you write a will that caters for your autistic child/adult, speak to us here.]
Child Care
Sending an autistic child to a child care specializing in providing early intervention support is not only a way to provide respite to the future caregiver, but also a step towards ensuring that your child is getting help with transitioning into the next stage of their life and assimilating into society.
Below are two such programs for your consideration. You can also find pre-schools that admit children who require early intervention here.
Integrated Child Care Program
This program is for children between the ages of 2 to 6. Such children require a low to medium level of early intervention support to prepare them for future entry into mainstream primary education. Applicants can include people diagnosed with autism.
Check here for the list of Integrated Child Care Programs.
Inclusive Support Program Pilot
This program is for children aged 3 to 6 years who require medium levels of early intervention support. They also provide intervention and therapy services within the preschool and such services could be integrated with early childhood education.
Check here for more information and for the list of Inclusive Support Programs.
Before and after school care
Special Student Care Centers
Special Student Care Centers provide before and after school care services to Special Education school-going students with disabilities between the age of 7 and 18. This means that your child must be enrolled in Special Education schools.
Check here for the list of Special Student Care Centers.
Care for autistic person age 18 and above
Day Activity Centers (“DACs”)
If your autistic adult child requires constant care and monitoring, and your future caregivers don't have the luxury of taking care of him/her during the day, you can consider enrolling your child into DACs - a community-based facility that provides care and skills training to persons aged 18 and above with disabilities (including autism).
DACs offer full time and/or part-time support during weekdays. Transport and meals are provided. Fees vary from center to center and are means-tested.
Check here for the list of DACs.
Residential care (Homes)
If you foresee that your autistic adult child may have limited family care support and find that none of the above arrangements are suitable or viable, residential care may be the best option for your child.
Currently, there are only two disability homes in Singapore that provide services to adults with the primary diagnosis of autism.
St. Andrew’s Adult Home (Sengkang)
St. Andrew’s Adult Home (Sengkang), a joint initiative between the Ministry of Social and Family Development and St. Andrew’s Autism Centre, is the first residential facility in Singapore that caters for autistic adults.
Website: www.saac.org.sg/saah
Application process: www.saac.org.sg/saah-admission
Fees: Means-testing
THK Home for Disabled @ Sembawang
THK Home of Disabled @ Sembawang - 20 percent of residential spots (out of 180) are reserved for adults with autism with the remaining 80% targeted at persons with intellectual disabilities.
Website: www.thkmc.org.sg/services_detail/thk-home-for-disabled-sembawang
Application process: Referrals for admission into the Home have to be made via SG Enable. For assistance on referral procedures, contact SG Enable at 1800 8585885 or ad.services@sgenable.sg
Others
It is not uncommon for persons with autism to also have intellectual disabilities. Some autistic adults live in residential care such as adult disability homes with non-primary focus on autism, community group homes, and adult disability hostels.
That being said, most of these institutions cater primarily to persons with intellectual or physical disabilities. However, these options could still be considered, especially if your child is diagnosed with other disabilities on top of autism.
Everything is ultimately on a case-by-case basis and caregivers should try and enquire as residential homes, care centers and programs that aren't specifically for autism may accept your case.
Check here for the list of Adult Disability Homes.
Check here for the list of Children Disability Homes.
Check here for the list of Adult Disability Hostels.
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Disclaimer: Nothing in this article or site should be construed as providing legal advice, financial advice or advice of any sort. The information provided are general in nature and may become inaccurate over time. Please consult a professional for advice.
For any issues or queries, please contact j@immortalize.io.
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