Unfortunately, neither health insurance nor Medicare covers long-term care. Medicaid could become your only option, so do what you can to plan ahead.
There are practical and legal steps to take when planning for your child with special needs as they turn eighteen and become a legal adult. Begin well before their birthday to ease the transition and ensure they continue receiving their government benefits as an adult. If they require life planning and decision-making oversight, parents need legal documents to act on their child’s behalf.
If your child receives benefits from SSI or SSDI (as a minor on a parent’s work record), when the child turns eighteen, the Social Security Administration (SSA) will automatically review their file. Minors and adults have different tests the SSA uses to determine benefits eligibility. The adult benefits criteria investigate if your child has a lasting mental or physical impairment that will “result in the inability to do any substantial gainful activity.” Your child may lose benefits or have to appeal a denial because of adult eligibility rules.
Income requirements are different too. Minors are eligible for SSI using their parents’ resources and income. Adult eligibility only includes their resources and income. Under adult eligibility rules, they might qualify for SSI, when as a minor, they did not.
These government benefits programs require your adult child to have a driver’s license or a state-issued identification card. Be sure to have their Social Security card readily available as well. Your child might need a bank account to accept employment or SSI checks (in separate accounts). You might help your child register to vote, and if a male, they will submit Selective Service information.
If your child with special needs has intellectual disabilities, they should take an adult IQ test between seventeen and eighteen. The SSA considers IQ test results when assessing if your child qualifies for benefits. A test result of 70 or below may ease the qualifying process.
If your child with special needs continues to require significant help with activities of daily living, you will need to create a guardianship. This court process takes time to access guardianship petitions. A special needs attorney can guide you or recommend a durable power of attorney instead. Every child and their family’s situation is unique. There may be intellectual or developmental disabilities, mental illness, or a combination.
There is a lot to think through, and having the information you need to make a thorough plan is crucial. Consolidate the information and paperwork in a specific location (file cabinet, folders, or personal computer). If you opt for digital copies, keep the data secure but let one other trusted person know your usernames and passwords. You’ll still have paperwork requiring a physical file, even if you choose to scan most of it.
Data gathering helps determine your legacy choices to effectively plan for your child with special needs and your other children as they become young adults. A special needs trust can help your child with certain expenses without compromising their government benefits. For a special needs attorney to effectively help your child, they must also understand your situation and how it affects everyone involved.
Personal Information Document
Create a document listing your personal information and your child’s, like:
- Name, nicknames
- Date of birth
- Phone numbers
- Social Security numbers
- Medicaid, SSI, and SSDI benefits information
Have a separate folder containing the physical copies of:
- Birth certificates
- Military service records
- Insurance policies
- Social Security cards
- Usernames and passwords
- Other relevant records
Identify and create an emergency contacts document for you and your child. Include individuals such as your:
- Spouse, partner, or significant other
- Former spouses
- Other children
You may include trusted service people who help you in your household with whom your child is familiar. Identify an individual you want to care for your child in case of an emergency if you are not available.
Medical History and Medical Providers
Create a document listing your medical history and providers for you and your child, including:
- Names and contact information for primary care providers
- Significant family history
- Insurance company with policy numbers
- Employer retiree coverage
- Health insurance
- Medicare or Medicaid information
If you have prepaid your or your child’s funeral, burial, or cremation, include the information here. If your child is still attending school, include their individualized education plan and counselors and teachers who work with them.
Assess your gross and net amount of each source of income via employment, Social Security, SSI, etc., and the current value of each asset, death benefits where applicable, and all beneficiary designations associated with the asset. Include:
- Policy numbers
- Contact information
- Financial advisors
- Recent tax statements
- Recurring bills, online or automated
- Your child’s representative payee accounts and special needs trust accounts
Legal Documents and Information
Collect all current legal information, such as names and numbers for:
- Attorneys in-fact
- Healthcare agents
- Personal representatives
Include a copy of your will, powers of attorney, and health care directive.
Accounts and Passwords
Create a list of your usernames, passwords, and security questions for:
- Online banking
- Photo storage
- Income-generating online businesses
Keep this data secure; however, ensure someone you trust knows where to find them. If your child has an online presence on social media or school accounts, do the same for them.
Create a Letter of Intent
A parent of a child with special needs will need to create a Letter of Intent addressing their child’s medical, family, and education history. It should include resources that provide them with assistance, employment guidance, and social, behavioral, and personal relationship information. It may list activities your child enjoys, daily activities, interactions, and hopes and desires for their future.
Meet with your Special Needs Attorney
Begin special needs planning with your special needs attorney, providing the data you’ve gathered. With a full picture of your child’s and family situation, your lawyer can start to address specifics.
- Where will they live when they are 18?
- What impact does that have on their SSI and SSDI qualifications if they are still under your roof?
- Will their living situation impact other government benefits programs?
Will your child continue to attend school? In many US school systems, an individual may remain in K-12 education until the end of the school year when they turn 21. Afterward, they may pursue adult education, perhaps geared toward future employment.
Does your child’s situation require guardianship, or will durable powers of attorney suffice? As the parent, you will likely be the guardian or power of attorney. However, you must still identify backup individuals to step in should you become incapacitated or die.
If it is reasonable, involve your child, letting them play an active role in the planning. Understanding basic life and independent living skills like handling money, time management, and accessing information and services help them to prepare. Involving them introduces personal responsibility and, for some, the idea of working and earning money, empowering your adult child to think about what lies ahead.
Each child’s circumstances and family situations are vastly different. However, there are certain steps you can take to compile and organize the necessary information for the next stage of your child’s life. The sooner you begin a proactive planning process and involve a special needs attorney, the better the outcome will be.
We hope you found this article helpful. If you’d like to discuss your particular situation, please don’t hesitate to reach out. Please contact our Cincinnati office by calling us at 513-771-2444 and schedule a consultation. We look forward to the opportunity to work with you.