Planning for the Long-Term Care of Your Special Needs Child

​This article contains links to third party websites for informational purposes. Wisconsin Health Insurance Advocate, LLC neither recommends nor endorses any third party website. This article does not constitute legal advice. Please see Sadie's note at the bottom with additional information and resources specific to Wisconsin. 

Planning for the Long-Term Care of Your Special Needs Child

Guest Blog by Jenny Wise, of http://specialhomeeducator.com/

When you have a special needs child who depends on you, you must plan for your child's future as well as your own. The way you choose to do so affects your child's ability to be cared for past the age of majority and receive benefits through important social programs such as Supplemental Security Income and Medicaid. Here are three things to consider as you plan for the future care of your child with special needs.

Guardianship and Conservatorship
 Without a guardianship or conservatorship in place, your child will be presumed capable of making his own decisions upon turning 18. Generally, the conservator is the person who makes financial decisions for your child and the guardian is the person who makes personal decisions for your child, but terminology varies by state. A child with a disability may need only a conservator, a guardian, or both; the conservator and the guardian may be the same person. Learn more about guardianship and conservatorship from Autism Speaks.

Parents must file for guardianship or conservatorship by filing a petition with a court stating why a guardianship is necessary. Your child will be appointed independent counsel. The courts approve guardianship or conservatorship if it is deemed the least restrictive alternative for the person with special needs. If a court denies guardianship, there are alternative options to help your child manage finances and make decisions, such as naming a representative payee, creating a special needs trust, or arranging for supportive living.

Special Needs Trusts
As you get older, it's important to start thinking about how you'll provide financially for your child when you're gone. A special needs trust is a key instrument in meeting the financial needs of an adult child with disabilities. Unlike other forms of inheritance, a special needs trust doesn't impact your child's eligibility to receive benefits through SSI and Medicaid.

A special needs trust allows individuals to contribute funds that can be used to pay for services not covered by Medicaid and SSI, such as dental and vision care and recreation. Because funds held by the trust can only be used for specific purposes, a special needs trust protects disabled individuals from financial abuse. However, CNBC advises that due to the cost of creating and managing special needs trusts, they're not practical for small amounts of money. To create a sizable special needs trust that secures your child's care long-term, you can name the trustee beneficiary of a life insurance policy with a guaranteed death benefit or settle a policy to fund the trust sooner.

Long-Term Care
If your child receives Medicaid, he is eligible to have certain medical and non-medical long-term care services covered under Medicaid. However, you may not be happy with the level of care your child is able to receive under Medicaid alone. If your child doesn't receive Medicaid or you'd like to pay for additional care, long-term care insurance is one way to pay for it.

It's important to understand the different types of long-term care insurance policies before purchasing, because different policies cover different types of care. Skilled care coverage pays for around-the-clock medical care, intermediate care coverage pays for intermittent nursing and rehabilitative care and custodial care coverage pays for assistance with non-medical activities of daily living. The coverage you choose should reflect the nature of your child's disability and how it may change over time. 

One day, you'll no longer be able to care for your child. While we hope that day is in the distant future, it's important to prepare today. Getting your long-term plans in place now is the best way to ensure your child is protected no matter what happens.

More information about Jenny can be found at http://specialhomeeducator.com/

Note from Sadie, owner of Wisconsin Health Insurance Advocate, LLC:
Wisconsin Health Insurance Advocate, LLC helps people in the Southeastern WI with setting up Long Term Care insurance plans and life insurance with long term care benefits (sometimes called "living benefits"). These plans are typically suited for individuals who are unlikely to qualify for Medicaid due to inheritance or means beyond Medicaid's $2000 asset limit.  We would not sell any long term care policy to someone who does not have the reasonable need for such a policy.  We cannot say the same for all agents, so please use caution and get to know the person from whom you're seeking help. 

For parents and guardians looking to start a plan of care, we recommend contacting local non-profits who specialize in this area. If you work with an agent on an insurance plan or a lawyer on a trust, we recommend you find someone local who you can meet with face to face and will take the time to explain your options. For more information on this topic, we recommend getting in touch with The Wisconsin Long Term Care Coalition, which can be found at  https://www.wilongtermcarecoalition.org/.