One of the great worries of parents with intellectually-disabled children is what will happen when those children are left on their own, either through parents growing too old to care for them, or through death. Who will take on the responsibility? And more importantly, how will this continued caring be funded?

The financial requirements of special needs children are unique, ranging from high critical care costs and the appointment of caregivers – to the provision of lifelong support. But there are several things you can do to ensure that your child is taken care of – both physically, emotionally and financially.

The road to security

Check for government benefits: This should be investigated first. Make sure that if your child qualifies for government assistance, that he or she is assured of receiving that funding, no matter how small that benefit might be.

Write up your will: This is a key and oft overlooked process. Ensure that your will is up to date, and that you have adequately provided for your child with lump sums in dedicated accounts and insurance policies. While leaving substantial funds is a good way to ensure a safe financial future of your child, setting up a special needs trust is probably the best way to go.

Draw up a trust: This is a tax-efficient way to ensure that when you die, there will be money available for your child. If possible, this should be arranged so that the child is entitled to a regular stipend each month over and above the government benefits. A special needs trust can be affected to ensure that your child should not be disqualified from the government disability benefit. It is advisable to work with a reputable financial advisor and to appoint a friend or family member to act as guardian of all financial matters.   

Life insurance: Taking out a life insurance policy that will help to take care of your child in the event of your passing is always a wise step. Work with a reputable financial advisor who will advise on terms of payment, how much you need to cover expenses for the child’s care, caregiver wages, etc. It is probably best to take Whole Life Insurance which provides coverage for life, only being paid out after your death. It carries a cash accumulation value that can be paid out if you so specify this before your death. As such it can form both a safety net for your beneficiary and still provide some investment return during your life. If you have set up a trust for your child, then you should make the trust the beneficiary.

Choose a legal guardian: It’s very important to designate a legal guardian for your child should you (and your spouse) be unable to care for the child. Depending on his or her level of need, your child may need care well into adulthood. This is especially relevant if your child proves incapable of making important life and financial decisions on their own.

Proclaim legal guardianship for yourself: You may need to become your child’s guardian so that you can continue to handle and organise their financial affairs after they have reached 18 or 21. If it is unlikely that your child will be able to handle their monetary affairs on their own, then this is an important step allowing you to set up and manage the most beneficial funding arrangements for your child.

Prepare a future care plan: This will identify the most preferred way you would like to see your child cared for. Quality of life will be key, and the resources prescribed for that, should be evaluated and listed. This includes aspects such as living conditions, education, and medical care. Always remember to share this plan with all your family members who may be called upon to ensure the details of the plan are carried out. If the plan is for your disabled child to eventually move into a group home or other facility, make that transition happen before your death rather than after. This gives the child time to adjust while you are still around instead of having to cope with two major changes at once.

The caregiver’s prescription: Make sure you document all the care needs of your child, including medical history, friends and family, doctors and medications – and not forgetting the programmes and treatments the child responds to best, and the services he or she will need. School, teaching methods, as well as recreation programmes must essentially be listed. In addition, how your child likes to be treated, and the routines he is best familiar with, must be documented. The familiarity and continuity of engagement should be maintained. Outline your child’s daily routine so that the normalcy of daily life may be maintained.

Early Intervention (EI): For babies and toddlers with disabilities or developmental delays there is usually a system of EI services. Early Intervention services can entail teaching physical and cognitive skills such as crawling and problem-solving, along with communication and social skills like listening and playing, depending on the child’s level of need. It’s important to research the services available as soon as possible so that you can incorporate future costs into your financial planning and have information ready to hand for anyone who may have to take care of your child on your behalf. 

Finally, the budget: This will be determined by where the child will live, who will look after him, monthly medical costs, educational costs, and how long he might live. Whether he will be cared for by family or placed at a private assisted-living facility will make a major difference to your budget. Also be aware that facilities may have to be provided should the designated family or friend carer be unable to fulfil their duties.

The story of Sunfield Home

Twenty years ago, Chris and Lynne Bennett, parents of a young girl with Down Syndrome, pursued their dream of establishing a home for their daughter and other intellectually disabled young adults in the Western Cape. Together with other parents, they founded the Sunfield Home in Wellington, providing a loving and nurturing environment for over 100 residents and day-care adult individuals.

Each individual is screened to evaluate their strengths and allocate activities according to their abilities. A protective workshop has been established where contract work is undertaken, as well as arts and crafts activities. An employment scheme has also been developed and as a result permanent and successful positions have been found within the surrounding wine and cheese industries.

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