Caring for Dependents with a Mental or Physical Disability
- Thomas Wilke
- Apr 1
- 4 min read
Many children born with mental and physical disabilities have their challenges shared by parents unprepared for the reality and challenges ahead. The work, diligence, and care on providing for children long into their adult years can provide a heavy mental toll and possibly a high financial burden if not managed effectively.
Understanding the benefits and access to help is crucial to reliving stress and transferring the burden beyond immediate family. The degree of help may vary and in extreme cases, waiting periods and entry to the most needful programs can take years which is why getting advice now and planning for the future early will save you hours of frustration and turmoil.
Varying Levels of Care
Each individual may require unique support, perhaps they are currently children with a severe learning disability and/or autism and need specialized education, or they need to attend an adult day-care center. However the degree, here is a quick rundown of different benefits to think about:
Home Modifications
Respite Care (time away for self-care)
Car Modifications
Therapies
Nursing Care
Specialized Education
Medications
In addition to the basic care needs listed above, there are various programs and organizations that actively engage in developing meaningful lives for these individuals beyond just maintaining their health. Identifying these additional resources is important when planning for the future.
Envision, if you will, your son or daughter living in their own home with roommates who share similar challenges. A caregiver would help with daily tasks such as cooking, running errands, and providing transportation to work or an adult engagement program (like adult day care). As a parent, you won’t bear the full financial burden. You can rest assured that, even after you are gone, your child will continue to receive care, have a roof over their head, and enjoy a hot meal. That is the goal—keep reading to see how you can make this a reality.
State of Texas Medicaid Waiver Programs
A waiver program allows individuals to live independently within their community while receiving support and assistance from a caregiver. Caregivers help with daily living skills, administer medications, run behavioral programs, and otherwise support day-to-day enrichment.
Eligibility for these programs depends on the individual's needs, and application approval can involve a lengthy waiting period—sometimes as long as 10 to 15 years. If you believe you will need this assistance, it is critical to apply as soon as possible. You can always opt out later, but it is much harder to get in on short notice. The long waitlist is due to funding and limited availability, much like a hospital with finite space. These programs are run by different organizations and are tailored for specific disabilities and age groups.
For more information, visit: The Arc of Texas Medicaid Waivers
Application and Benefits Process
Step 1: The first step is to contact the Texas Health and Human Services Commission (HHSC) and apply for benefits. They will screen for eligibility. You can begin the process here:
Additionally, applications can be made over the phone or by printing out an application. For more details, visit: Navigate Life Texas – Medicaid for Children with Disabilities
Step 2: After applying, you will receive literature about available plan options that are based on the type of assistance requested during the application process. You’ll need to select a primary care doctor, as well as any necessary specialists. These options should be searchable through the Medicaid system.
Social Security Income
A significant portion of the financial support for your child will come from Social Security Disability Income (SSDI). This process can take six months or longer to complete. Applications must be submitted either directly at a Social Security office or online through the Social Security Administration (SSA).
Disability income amounts vary based on the nature of the disability, but similar to Medicaid, qualifying documentation (e.g., medical records, doctor’s notes) will be required. In many cases, expenses such as medical fees may need to be paid out-of-pocket initially, so it’s essential to keep receipts for these expenses.
When payments are issued, they will be made to a Representative Payee (usually the parent or guardian) who is responsible for managing the child’s care. The family's income will be considered in determining the level of benefits. Lump-sum payments are also an option.
Setting Up Trusts and ABLE Accounts
Later in life, once you’ve secured the right level of support and care for your loved one, special attention can be given to planning for care after you’re gone. It’s always best to consult with a financial advisor and estate attorney for specific planning and advice. However, there are options to set up special needs trusts and investment accounts that can hold cash for qualifying expenses.
As with financial advice for families, the same principles apply to individuals with special needs. Holding funds in an ABLE account can help individuals save money in excess of state limits (currently $2,000). These accounts are protected from financial means-testing by Texas Medicaid and Social Security Income, which means they won’t negatively impact eligibility for benefits. This is a smart wealth management tactic.
Special needs trusts serve a similar purpose, ensuring wealth is protected and continues to be used in the best interest of your child long after you’re gone. Its best to discuss these with a attorney that specializes in these so that they are structured correctly. Range of costs can vary, but the investment to direct funds accordingly or match with a life-insurance policy will resolve and transfer majority of the risk that results without planning.
Finalizing Support
Planning for the future care and support of a child with special needs can be overwhelming, but with the right resources and early preparation, it is possible to create a stable and secure life for your loved one. By understanding the available programs, seeking financial assistance, and setting up long-term plans, you can ensure that your child continues to receive the care they need, even after you're no longer there to provide it. Remember, you're not alone—there are many resources and professionals ready to help you navigate this journey, and by taking proactive steps today, you can secure a brighter tomorrow for your child.
If you wanted to get started today, consider calling and setting up a time to meet.
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