Please show your support for these initiatives to promote autism and special needs awareness

Dear everyone:

It has been a long while since I had posted anything on my Awakening Minds.sg Website. I have been busy raising Sebastien (my 16-year-old autistic son) who is slowly maturing in his journey of adolescence. I have also been involved in producing online content for a charitable foundation to promote youth mental wellness. When it is up and running, I will share more info about it.

But in this email blast, I want to highlight two other initiatives that caregivers of autistic kids have started (I am directly involved in Initiative 1) to highlight the need for the Singapore government to do more in the area of autism and special needs — currently, there is a dire lack of funding and services for autistic and special needs individuals and their families. Over the last decades, despite some progress being made in the area of special education, the Singapore government continues to under-fund education and services for autistic and special needs individuals, thus imposing a hefty burden for their caregivers to foot the bills of raising their special needs children (from childhood to adulthood). With these two initiatives, we hope to highlight these issues and engage in a dialogue with the government, so that we caregivers can take a more active part in shaping policies that can genuinely alleviate the burden of caregivers of autistic and special needs children.

I implore everyone, particularly Singapore citizens, to take a look at these initiatives. Even if you are not a caregiver, I hope that you too will take part in these initiatives to show that you care about building a compassion, caring, and just society that cares for all its people, including those with special needs. 

Initiative 1 involves writing to your MPs, Acting MCYS Minister Chan Chun Sing, and PM Lee, using the template below, if you wish. 

Initiative 2 involves going online to sign a petition.

Initiative 1: Appeal for Day Activity Centres and Residential Homes for Moderate and Lower-Functioning Autistic Adults

Dear MP ______________:

My name is ________________; I am a resident of ______________. Along with a group of concerned parents with low-functioning autistic children, we have sent an email to Acting Minister Chan Chun Sing to request for a meeting to share our knowledge and highlight the dire need for the government to provide the necessary funding for VWOs to provide more Day Activity Centres for autistic adults. The following is the letter addressed to Acting Minister Chan (cc'd to PM Lee). 

Appeal to Address the Needs of Autistic Adults (18 years and older)

A genuinely inclusive and first-world society must care for all its citizens, which should include people with disabilities (PWDs), regardless of whether or not they can contribute to society economically.

As the saying goes, "A nation’s greatness is measured by how it treats its weakest members." Therefore, how we in Singapore treat our PWDs is the ultimate reflection of the moral quality of our society.  

And if we as a nation strive to be considered a first-world nation, then Singapore needs to do considerably more to ensure that the needs of our PWDs are met at a level that accords, or at least approximates closely, to the best practices of first-world countries.

*          *          *          *          *

Thus far, despite the progress that has been made in the last decade, there continues to be shortfalls in basic education and services for autistic individuals of all age groups.

However, none is more glaring than the inadequate provision of Day Activity Centres (DACs) and the absence of residential homes for moderate and lower-functioning autistic adults aged 18 and above.

As a result, many end up at home, leading extremely limited lives within the four walls of their homes, while imposing a hefty burden on their caregivers. Many caregivers are unable to lead fulfilling lives and contribute much to society, as they assume the full financial burden and daily responsibilities of caring for their children.

To the best of our knowledge, we believe that as many as 1,000 such autistic adults are now living at home. These individuals should not be confined to the home: the lack of an organised programme will likely result in severe behaviour regression. This could in turn endanger the safety of such families, which could even spill over into the wider society at large.

*          *          *          *          *

Currently, there are only 70 to 80 places available at autism-specific DACs. The government is expected to roll out another 30 to 40 places over the next five years. Clearly, this rollout pace is grossly disproportionate to the actual numbers of autistic adults who are in need of such a facility.

What we have learnt is that Volunteer Welfare Organisations (VWOs) are unable to offer more places due to inadequate government funding: Though it costs about $2,200 per month per client in a DAC, current government funding is only about $300. It is evident that VWOs are direly in need of significantly more government support to address the desperate situation faced by autistic adults and their families.

 *         *          *          *          *

Here are some specific recommendations to address the inadequate DAC situation:

1) All moderately and lower-functioning autistic youths and adults aged 18 and above should be given placements at DACs at an affordable rate (families paying no more than $500/month). The more able ones could be placed at job training centres.

2) The government should provide 90% of the operating costs of Volunteer Welfare Organisations running DACs. Funding should also be based on internationally-accepted best practices for such DACs. Thus, VWOs will be able to run sustainable programmes and put their focus on service quality, rather than worry about the lack of funds.  

Such a budget is well within the means of Singapore and befits a first-world nation. 

In addition, we would also like to propose the following:

3) The Special Needs Trust Company (SNTC) should expand its scope of service to allow parents to leave in trust assets such as HDB flats, private houses, and/or income-bearing publicly-listed securities. Considering the inflationary environment, leaving cash is not in the best interest of the beneficiaries.

Moreover, we should consider the possibility of organising a group of Volunteer Deputies, as defined in the Mental Capacity Act, to help the SNTC make appropriate financial decisions.  Such volunteer Deputies can consist of parents, siblings, professionals, etc.

4) The government must look into underwriting the insurability of PWDs, in particular those with autism.

*          *          *          *          *

While putting in money and resources to address the needs of PWDs may not improve Singapore’s GDP, it is one of the key responsibilities of a caring first-world government to ensure that the needs of all its citizens are met.

At the end of the day, if the Singapore government wants its people to care about Singapore, it must first show that it cares for all its citizens, including those with autism, by providing sufficient financial support to VWOs so that they can provide the necessary services.

During last year's National Day Rally, PM Lee had expressed hopes for the government and the people to strengthen their relationship with one another in building Singapore together. Moreover, he hoped that Singaporeans would take the initiative to come up with solutions, even as the government strives its best to find solutions for issues and problems.

We are a group of caregivers who would like to have a direct involvement in helping the government to shape a policy and programmes that would meet the needs of autistic adults (18 years and above) and their families. Spurred by the needs of our children, some of us caregivers have become highly knowledgeable and experienced in diverse areas of working with autistic kids — biomedical and sensory approaches; behavioural management strategies; and educational approaches. We are an untapped resource and we believe that we can contribute to the formulation and implementation of an appropriate policy for autistic adults and their families.

Therefore, we would like to request a meeting with you in your capacity as the Acting Minister for Community Development, Youth and Sports,as a follow-up to this letter. More importantly, we hope that this meeting would lead to the creation of an open and ongoing channel of communication so that we caregivers will be kept in the loop of what is happening and be able to participate in an active capacity. We are confident that more parents with special needs children will be encouraged to step forward to serve the community, if they can see that the government is genuinely interested in in working together with us for our children's long-term well-being.

Thank you in advance for your consideration. We look forward to hearing from you.

I would greatly appreciate your follow-up to the letter.

[Insert a photo of parent and child, if you are a caregiver] 

Initiative 2: Petition for equality and opportunity to special needs citizens in Singapore

Also, please show your support for Money K, who has started the following petition. He had written an outstanding article highlighting the lack of special needs educational opportunities and funding in Singapore (please read below). 

https://www.change.org/en-GB/petitions/singapore-conversation-provide-equality-and-opportunity-to-special-needs-citizens

From iTODAY:Are the intellectually disabled lesser citizens?

Money K | 21 Sep, 2012 1:10

In Singapore, people with intellectual disability are treated as citizens of a lesser order.

It is encouraging that some government ministers have called for more help for disadvantaged children and equal opportunity starting from early as pre-school, but there is a segment of society, the intellectually disabled, that continues to be denied the

equal opportunities of their able compatriots.

Compulsory education was introduced to our Constitution in 2003. However, it explicitly excludes children with physical and intellectual disability. The exclusion is not an act of generosity to parents of the disabled; it is an outright abdication of responsibility by the Government.

The result of this is that parents of children suffering from autism and other forms of intellectual disability often spend months in waiting lines for their children's acceptance by special schools.

The compulsory education policy should ordinarily mean that the Government would dutifully provide institutionalised education to all, able-bodied or disabled. However, for the intellectually disabled, the Government has delegated this responsibility to voluntary welfare organisations (VWOs), which are often lacking resources in terms of teachers, specialists, facilities and funds.

The Government should be taking the lead, providing the necessary infrastructure and funds to provide educational and developmental opportunities for the intellectually disabled, with VWOs playing a partnership role.

There are other areas of inequality and challenges faced by the intellectually disabled and their families.

School fees: : Having been ostracised by the compulsory education policy, such children suffer another form of discrimination in the Special Schools system - fee inequality. In government primary schools, there is no school fee but there is a S$5.50 miscellaneous fee regardless of the parents' income. In special schools, the school fee is dependent on the family's income. The higher the income, the higher the fee. Following means testing, fees could range from S$45 to S$850 a month. That's as much as 150 times more.

Transportation: Today, public transport concessions are provided to senior citizens above 60 years old and those in schools and tertiary institutions. Why not life-long public transport concessions for the disabled? It could considerably help low-income families. A friend in his 60s who lives in an upscale condominium uses such a concession card, but young disabled adults pay full transport fares when travelling.

Medical insurance: Securing Medisave-approved Medishield insurance for the intellectually disabled is very challenging, sometimes impossible. Imagine the costs involved when some accident or sickness befalls them. Parents do not mind paying additional premiums in order to provide a medical safety net for such kids. Perhaps the Central Provident Fund could moot an appropriate scheme.

Tax relief: The tax relief provided for an earner with a disabled child is a pittance and does not take into account the true cost some parents incur in caring for their disabled children. Speech therapies, occupational therapies, alternative therapies and specialised medicines are par for the course and are very expensive.

Also, tax relief for employment of a domestic helper is only provided to working mothers. But what about situations where the mother is forced to stay home because of such challenging circumstances - can't the working father benefit in such exceptional cases?

In short, life is tough emotionally and financially for parents like us, who feel that their children are treated as second-class citizens.

The intellectually disabled do not rank equally to the able-bodied in many aspects of public policy. Many organs of state have abdicated the responsibility to the social sector to care for this small segment of the population.

In Singapore, economic pragmatism seems to be the overriding driver of government policy; compassion for the unfortunate and disenfranchised is more selectively considered. Riches without compassion for the infirm, the poor and the disabled do not make for a gracious and caring society.

When ministers espouse "equal opportunity", the words ring empty to parents of the intellectually disabled. If I may rephrase an Orwellian maxim to describe the situation here, "All citizens are equal, but some citizens are less equal than others." The Government must act now to shape policies and budgets in a manner that fairly covers all segments of society.

Money K, a Singaporean, works in the financial services sector. He is a father of three children, one of whom is a 21-year-old suffering from autism.

Thank you all in advance,

Kah Ying