Raising a child is expensive, but the costs can increase significantly for families raising children with disabilities. For example, the average lifetime cost for a person with autism can run between $1.4 million and $2.4 million.1
If you’re the parent of a special needs child, you know the importance of planning for lifelong care - especially after your passing. It can be difficult to contemplate, but with patience, love and perseverance, a long-term strategy is attainable and can help bring some peace of mind. Here are four ways to help financially protect your loved one.
Step #1: Envision a Life After You
Just as every child with special needs is unique, so too are the challenges facing their families when planning for the long term.
Think about the potential needs of your child. What will they require in order to continue maintaining their standard of living? This could include things like:
- Daily custodial care
- Ongoing medical treatments
- Physical therapy
- Group home vs. independent living
- Assistance from family members
Thinking about these concerns now can help form the vision of what may need to be done to plan for your child’s care.
Step #2: Address Estate Planning Concerns
Without proper planning, your child’s lifetime needs can quickly outstrip your funds. One resource is government benefits, such as Supplemental Security Income (SSI) and Medicaid, which your child may qualify for depending on their situation.
Because such government programs have low-asset thresholds for qualification, you may want to consider whether to make property transfers to your special needs child.
You should also make sure you have an up-to-date will that reflects your wishes. A special needs trust, for example, can be structured to fund your child’s care without disqualifying them from government assistance.
Step #3: Involve Other Family Members
All affected family members should be involved in the decision-making process. Gather up your child’s siblings, aunts and uncles, grandparents and begin an open dialogue with loved ones who may be able to step in should the need arise. Be transparent in what would be required of them. Caring for a loved one with disabilities can be time-consuming and stressful, you’ll want everyone to have realistic expectations of what may be expected of them in the future. This can also help you better identify certain areas of concern that may not be able to be addressed by family members.
Step #4: Identify a Caregiver
In order for a caregiver to make financial and health care decisions after your child reaches adulthood, the caregiver must be appointed as a guardian. This can take time, so start setting this in motion as soon as you can.
To do this, you can write a “Letter of Intent” to the caregiver and family to express your wishes along with information about your child’s care. This isn’t a legal document, but it may help to communicate your desires. Store this letter alongside your will, in a safe place.
Planning for a child with special needs can be complicated and overwhelming, but you don’t have to do it alone. Working with loved ones and qualified professionals can help you navigate the various facets of this challenge.