To make sure that happens, there are practical steps you can take.
Prepping for a secure financial future
According to the U.S. Census Bureau, more than 40 million Americans were living with a disability in 2016.1 And adults with disabilities are living longer than ever before.
However, many parents of children with an intellectual or developmental disability aren’t doing enough to prepare for a future without them. In a study conducted by the University of Illinois, 32 percent of parents had done a moderate amount of preparation, while 12 percent had done nothing. 2
It’s not because they don’t want to. It could be they lack sufficient information (39 percent), or simply don’t have enough time in the day.2
In the meantime, here’s how you can put your child on a path that leads to a secure future – with or without you in it.
5 action steps you can take now
As a parent, you can plan for your child’s future by taking action with these five steps:
- Step 1: Choose your team of dedicated family members and professionals. Your attorney, social worker, and financial professional should understand fiduciary requirements, government benefits, tax laws – and any special concerns your family may have.
- Step 2: Assess your needs. Set short- and long-term goals. Determine the amount of money you need and how much your loved one will need.
- Step 3: Prepare and implement your strategy. Think about the lifestyle you want for your loved one, what it will cost, and the resources you will need to make it happen.
- Step 4: Write down your vision. Write a Letter of Intent for future caregivers and trustees to direct them about your wishes.
- Step 5: Go over these steps annually to review any health or benefit eligibility changes, a changed financial situation, the current financial team, a special needs trust, and any changes needed to meet your goals.
Set up a personalized estate plan
Your child might qualify for government programs such as Medicaid or Supplemental Security Income (SSI), which can total up to $750 a month (in 2018)3 and is meant to pay for food and shelter.
However, there are strict income and asset limitations. For example, your child must have less than $2,000 in assets to qualify for SSI.1
It’s important you properly prepare a financial strategy so government benefits aren’t reduced – or stopped – when they’re supplemented with personal funds or a life insurance policy.1 You’ll want to talk to a financial professional to learn more.
Life insurance benefits
Speaking of life insurance, it can provide smart solutions for families with a special needs child.
For example, the death benefit provides tax-free financial support, which can help your family to maintain your current lifestyle. A policy’s cash value can help with current and future costs of raising your child with special needs, and can grow tax-deferred.
Additional agreements are available to help enhance your policy and address your goals, such as providing for your own care. (You don’t want to forget about your financial needs as you grow older.)
Consider a special needs trust
If an excess amount of countable resources disqualifies your child from receiving SSI benefits, consider establishing a first party special needs trust (SNT). Third parties can also set up other types of trusts to hold or distribute gifts or inheritance.3
Be sure to consult a financial professional
To identify and meet your financial needs and goals, consider working with an estate planning attorney and financial professional who can discuss with you these estate-planning tools:
- Power of attorney (POA) is the person who has the legal right to handle your financial affairs if you’re unable to do so.
- Living will is a legal document that provides direction regarding your health care in case you become incapacitated or terminally ill.
- Trust is a legal document that directs the management and distribution of assets.
- Letter of Intent is an informal document that gives detailed instructions to future caregivers and trustees after you die. These instructions should provide an overview of your child’s benefits as well as identify the people who you wish (or don’t wish) to play a role in your child’s life.1
- Special needs (supplemental needs, first party or third party) trusts protect your child’s assets while allowing her or him to maintain eligibility for public assistance benefits. Note: When the beneficiary dies, money left over in a first party trust first goes to repay states for benefits paid. On the other hand, third party trusts give remaining money to family members.1
- ABLE Accounts are tax-advantaged savings accounts that let you save up to $100,000 without losing government benefits.4
Potential education and job resources
Every parent dreams that their child — with or without special needs — can reach his or her full potential. This includes education and finding a fulfilling job or career.
The Section 529 College Savings Plan lets families set aside money for a wide range of education expenses. The money grows tax-free. To be sure your child’s SSI benefits aren’t negatively affected, only use funds in a 529 plan for qualifying expenses, such as tuition fees, school supplies and transportation.5
The Social Security Administration’s (SSA) Ticket to Work program enables SSI recipients to explore free employment services. In addition, Plan to Achieve Self-Support (PASS) allows SSI recipients to set aside funds to cover expenses related to their job search.3
Don’t forget — enjoy the here and now
Finding time to start putting financial plans in place can help ease your worries about the future for your child with special needs. And help you enjoy life’s everyday moments with your family now.
Remember, there are steps you can take — and you don’t have do it alone. There are resources you can turn to, including a financial professional, who can make recommendations ensuring the happiness and welfare of your child down the road.