How to plan the future of a special needs child
The challenges of raising a child with special needs can be huge and often parents don’t feel they have time to sit down and think about the future. But a toddler who has autism will one day reach adulthood. Then decisions will need to be made about issues like living independently or at home, managing money and ensuring proper support services are in place.
In some families, care for a child with special needs may eventually fall to a sibling, as is the case with Susan Murphy. After her parents died, she took on responsibility for her sister Lea Ann, who suffers from developmental delays, epilepsy and hearing loss. Her sister lives in a residence, but Murphy also provides a great deal of care during her visits and organizes special treats for her sister. Yet Murphy can foresee a time when things will change.
“I’m glad to do (all of this) for her, but I don’t know how long I’ll be able to keep it up,” she says. “Chances are she’s going to outlive me.” So Murphy is now searching for a residence offering more specialized care.
Acknowledging, and then planning, for a time when you won’t be around to help your child is tough, says Katherine Moxness, director for professional services at the West Montreal Readaptation Centre (WMRC). “From an emotional point of view, it’s hard to accept that you won’t be there as the guardian protecting your child (or sibling),” she says. But it is essential to do so because obtaining appropriate, long-term services can take time.
Moxness says families can start by contacting their local CLSC where a social worker can evaluate their needs and discuss options. From there, families may be referred to an organization that offers programs and services, and pairs clients with caregivers who can live with them.
Some families insist on keeping their disabled children at home as long as possible. But Moxness warns that without a plan, this can backfire. “There was one case where the mother died and her disabled son was alone in the house for four days with his dead mother. He came to us in crisis,” Moxness said. “You want this to be well planned, well thought out, and well transitioned. You don’t want it to be an emergency or have all the responsibility suddenly placed on a sibling.”
Families must also think seriously about financial planning. “When someone with an intellectual handicap is in the public system, they have to go through welfare, which only allows an excess of $2,000 in their account annually, otherwise their welfare is cut off,” she notes. “Families are disappointed to hear this. They often want to leave something extra in their wills, but then the welfare will stop until these extra funds are spent.”
Moxness advises families to get help from a notary or a lawyer to look at ways of protecting an inheritance for the client. For example, families can invest in a home that their child will live in.
The government has also started a Registered Disability Savings Plan (RDSP), which allows families to create long-term savings without the risk of losing welfare benefits. For more information, call (800) 959-8281 or visit www.cra.gc.ca/rdsp.
Resources for families
The Public Curator of Quebec protects people who are unable to manage their own personal and financial affairs. A family member can have a private curator, or tutor, who will go over the finer details involved in their regular care, help with concerns over money and protect them against financial abuse. The curator has access to financial documents and acts as a legal representative. For more information, call (800) 363-9020 or visit www.curateur.gouv.qc.ca/cura/en.
The West Montreal Readaptation Centre, located in Lachine, offers workshops and information on the different services available to families living with a special needs individual. For more information, call (514) 363-3025 or visit http://crom-wmrc.ca.
The West Island Association for the Intellectually Handicapped (WIAIH) also offers workshops and support groups on caring for a disabled family member from birth to old age. For more information, call (514) 694-7090 or visit http://wiaih.qc.ca/new.
To connect to the CLSC in your territory for assistance with resources, visit www.msss.gouv.qc.ca/reseau/rls (in French) and click on the link for “Liste de 95 CSSS” to find the contact information for your local branch.