Support gap for adults with autism

“Disability only becomes a tragedy when society fails to provide the things needed to lead one’s daily life.” - Judith Heumann

Recently, four lawmakers filed House Bill 6743 or the Monthly Subsidy for Parents of Children with Disability Act. The bill seeks to push for a monthly PHP2,000 subsidy for parents of children with disabilities to help defray the costs of raising children with special needs. The lawmakers cited a United Nations Children’s Fund study which showed that the cost of raising a child with a disability is 40 to 80 percent higher than other children without disabilities.

This is one of a series of bills and even laws in our country regarding concerns related to disabilities. While legislative acts such as these are to be praised, one of this bill’s provisions clearly illustrates one of the main gaps in our society’s attempt to help people with disabilities.

This bill states that this subsidy automatically ceases once the child with disabilities reach the age of 21 years old. This provision typifies the limits of government intervention for parents of children with disabilities. While our government have some programs in place for children with special needs, all of these programs stop when these children become adults. What happens to these kids when they become adults?

There are many forms of disabilities and parents of children born with these various disabilities face a myriad of problems and obstacles as they try to raise their sons and daughters with special needs. Many parents, with the help of professionals and communities and even government agencies, are able to provide care, guidance, training and support for their children with disabilities that enable these kids to grow up as fully or sufficiently functioning adult members of societies. Unfortunately, there are instances where the physical and cognitive capacities of these adults with disabilities leave them permanently unable to care for themselves, let alone become a working part or member of societies.

One of the most painful experience for parents is to be told that their child has a severe level of disability that would require higher level of support and thus prevent the individual from fending for him/ her throughout life. For these parents, they will have a lingering question in their minds for the rest of their lives. Who will take care of their children when they are gone? This question can cause unimaginable pain or stress that often produce stress, anxiety and collateral damaging effects for the family in question.

One such permanent disability is autism. Autism world-wide incidence last 2021 has grown to 1 in 100 children. Autism has no cure. It is a life-long condition for those diagnosed within the spectrum.

In the Philippines, parents of children with autism or other permanent disabilities have few or no options for providing assured continuing support and care for their children. The government provides various support and care for children with disabilities but all of these programs stop when they become adults. What is worse is that there is a painful lack of awareness for supporting or understanding adults with these disabilities.

There are some individuals who have formed a group to provide mutual support programs to give their adult sons and daughter activities that cater to their needs. There are even some groups who, in cooperation with like-minded institutions, have attempted to provide special communities for adults with these disabilities to survive and thrive. These are in the experimental stage and of course only able to help a small portion of adults with disabilities.

Unfortunately, private initiatives alone will be insufficient. The government must step in to help provide solutions to this problem or gap in support. To ensure that the government take action, parents of disabled children, related private institutions, associations, and health professionals must band together and coordinate with government to make them aware of the situation and then come up with suggested solutions aimed at lessening the gap in support for adults with these disabilities.

There is an old saying that it takes a village to raise a child. There was, in fact, a book by Hillary Clinton entitled, “It takes a village” which expounds on the concept that society and government in general, must pitch in and help parents. For parents of children with disability, this concept is even more important. It really does take a village to care and even help parents of children with special needs. As such, more than the said parents, associations and even groups, there is a need for other members of our society to be aware and contribute to these efforts.

Though direct financial assistance for parents of adults with special needs would be appreciated, the apparent cost for such program would stagger even in the richest of governments. Perhaps, non-financial measures such as tax breaks, health care and other incentives be given to parents to allow them to build the financial capacity to set aside funds for the future. In addition, government support for private institutions that are already taking the initiative for related programs can help expand their reach. Private corporation willing to engage in related activities for their CSR can also be given breaks or even additional pathways for ease of doing business. There are probably many groups or individuals with better and newer ideas for this problem. This is a problem that requires out of the box solutions from all sectors.

One thing is certain. With a growing number of children diagnosed with autism and other permanent disabilities every year, the problems of these children growing up to be adults must be addressed as soon as possible.

This is my oblique observation.

Editor’s note: The opinions expressed in the foregoing article are solely the author’s and do not reflect the opinions and beliefs of the Philippine News Agency (PNA) or any other office under the Presidential Communications Office.