While having a vision is great, we also need to plan financially for ourselves or our soon to be adult with a disability. There are ways to prepare for the future needs of yourself or someone you love. Use the vision tools to ensure that the financial plan you create allows your person with a disability to live a good quality of life that is meaningful to them. These may include:
1) Learn about work options and how to use supplemental security income (SSI) work incentives to keep any necessary benefits.
2) Learn About ABLE accounts. ABLE accounts are owned by individuals with disabilities (not mom/dad). It allows people with disabilities a place to save that will not impact SSI. Parents will need to decide if the special needs trust funds the the ABLE account on a regular basis to cover any needs of the person with a disability. Individuals with disabilities may need to deposit wages into an ABLE account to help prevent a checking/savings account from going over the $2000 resource limit for SSI. A person with a disability will need to learn budgeting skills in order to manage their account. Often a debit or credit card is associated with the account to use ABLE funds. Some ABLE accounts require moving money from the ABLE account onto the card in order to use funds. Some ABLE accounts have fees associated with withdrawals or having a debit card. These will all need to be factored in within a budget.
3) Establish a will to designate where your remaining funds will go (special needs trust or ABLE) and if guardians are needed (as needed). Guardianship can be full or partial. There are also a variety of Alternatives to Guardianship that may be prefered in order for the person with a disability to have a good life. Explain to people the difference between a Supporter vs. a Guardian. Guardians may have control over financial decisions; Supporters only help people with disabilities make their own financial decisions. A supporter has NO control over how the person with a disability uses their own money.
4) Set up a Special Needs Trust, as needed. Trusts are usually set up by an attorney because wording is important to prevent a loss of benefits. Third Party Trusts or Pooled Trusts can prevent the person from losing government benefits. An example of a Pooled Trust is the Texas Master Pooled Trust run by the Arc of Texas. Decide who will be the trustee, how money will be paid out and for what (it can only supplement federal benefits, not replace them) and how the special needs trust will be funded:
- Inheritances or other funds from 401K, IRA or other retirement benefits. There may be tax implications with 401K, IRA or other pension funds so check with an accountant/financial planner.
- Buy life insurance to fund the trust upon your death.
- Gifts from family and friends.
5) Make sure you have documented the good life your adult with a disability wants. Use the Trajectory Worksheet or Use a formal Letter of Intent. Communicate with others your, or your adult with a disability’s wants for a meaningful life.
6) Write down how you do things as a parent or what works best for your son/daughter. This information can be documented in Letter of Intent, but creating a binder of “How To’s”, a Dropbox file, or Google Drive file, etc. can also be used. If it is online, please share a link to the information with a trusted person. Start slowly and document one thing at a time instead of trying to document all in one sitting. Using the Vision tools may help document some important issues. Here are other things you may need to consider:
- Medical Information – Doctor, dentist, specialists names, phone numbers, addresses, etc. Medication – What is taken, when, and how much. Medical conditions and what they look like for your son or daughter. Sometimes our children have a behavior when they run a fever or have a toothache. How do you know? Let others know what to look for.
- Communication strategies – Does your child use AT or PECS? Sign language or something not so straight forward. Write down any communication strategies or signs that are important.
- Behavior strategies or responses to challenging behavior. Remember, behaviors you no longer find difficult (echolalia or flapping) may drive someone else crazy. You may need to be explain the behavior and strategies you use to maintain your sanity.
- Social Security Information – Write down when payments are received, how to transfer money for rental agreements, the log in for the mySSA account, how and when to report income, and the address and phone number of the Social Security office you use. If you know the name of the SSA person that handles your son/daughter’s account, that will be very helpful information.
- Medicaid & Medicare – Document the phone number to contact if insurance is not working or you have a problem. With Medicare, is there a log in for medicare.gov that is needed in case a change is required during the open enrollment period (Oct-Dec).
- DME – Write down where and when supplies are ordered and the company you use. If you have had any difficulty, document the contact or best way to resolve issues.
- Employment – Write down how & when to obtain pay stubs, the name of the boss or important support person on the job, names & phone numbers of job coaching agencies. Explain how to get services fromTexas Workforce (TWC) if you have used them in the past and write down the specific contact you have, if needed.
- Medicaid Waivers – Document contact for the agency provider, the local LIDDA and service coordinator, and the Financial Management Agency. Write down how to use EVV systems.
- Facebook groups – If you get a lot of information from particular social media Facebook groups, you may want to provide the link to the groups so that people that assist your child after you are gone don’t have to search for credible information.
Resources:
ABLE Accounts – National Resource Center
Pacer Center: Possibilities: A Financial Resource for Parents of Children with Disabilities
Transition in Tennessee: Finances & Benefits downloadable resources
Federal Reserve Bank of Dallas: Building Wealth: A Beginners Guide to Securing Your Financial Future
Lifestyle Calculator – Texas Reality Check a great way to see how much needs to be earned/provided monthly for a person to live the life they want.
FDIC – Money Smart play games to enhance financial skills and create positive banking relationships in this financial education program.
