A topic that is generally hard to broach but always on the minds of caregivers of people with disabilities is what happens to their loved-ones when the caregiver is no longer able to care for them. SPD’s director for inclusion advancement Joyce Wong promotes the need for permanency planning in this letter published in The Straits Times Forum on 15 March.

Parents and caregivers of children with special needs often worry about their children’s welfare, in the event that they are no longer around to care for them.

At SPD, which supports people with disabilities, we have met many parents and caregivers with such concerns.

With smaller families and an ageing population, there are fewer family members to share the caregiving role.

Many caregivers of persons with disabilities are also elderly parents, who will, in time, no longer be able to continue in the caregiving role.

It is, therefore, important to look into “permanency planning”, that is, planning a continuous living arrangement for one’s loved ones.

Many caregivers are retired, have little or no income, and may not have the knowledge to carry out financial and permanency planning. Yet, not having a properly planned arrangement can cause extensive stress to family members and the person needing care when the primary caregiver suddenly falls ill or dies.

Alternative care arrangements may not be readily available, and the family may struggle with having to make immediate adjustments and cope with changes.

The Special Needs Trust Company was set up to help families administer and disburse trust funds to their loved ones.

Voluntary welfare organisations could also play a bigger role in helping their clients plan for care arrangements. This could involve providing professional advice to family members on legislation, assistance schemes available and care options provided by institutions, as well as preparing the clients for possible future living arrangements.

Permanency planning could be integrated into the clients’ current customised care plan to enable service providers to have regular conversations with caregivers on this topic.

It is also important to provide structured training to social service professionals to equip them with the necessary knowledge and skills to assist their clients.

To give parents and caregivers peace of mind and to ensure that those with disabilities receive continuous financial and caregiving support, we encourage parents and caregivers to plan early for their loved ones’ long-term care.