According to a survey by MetLife, most families of children with disabilities are very concerned about being able to provide lifetime support for their loved ones with special needs. Many of them do not believe these dependents will be financially independent. Yet, most still need to take steps to plan for the future, such as setting up a special needs trust, writing a letter of intent, naming a trustee, and identifying a guardian.
After the initial meeting with your special needs planner, it is essential to remain in contact. When life changes occur, your special needs plan should adjust accordingly. Here are five critical reasons to get back in touch with your special needs planner:
1. Your Child With a Disability Is Turning 18
When an individual turns 18, they become an adult in the eyse of the law, allowing them the ability to make their own financial, legal, health care and educational decisions. Families should have a discussion on how able the individual is to make these important decisions on their own. If the individual is able to make some decisions on their own but need help, a supported decision-making arrangement may be appropriate. If the individual is unable to make these kinds of decisions, families might opt for the legal guardian route.
According to National Core Indicators, adults with severe intellectual disabilities are more likely than those with mild or moderate intellectual disabilities to have guardians. Family members usually serve as guardians, though friends and professionals may also fulfill the role.
Your special needs planner can help you through the guardianship process, which can take several months. They can assist you with the following:
- Gathering the required materials, including an up-to-date physician’s report
- Providing notice to other family members
- Petitioning the court for guardianship
- Presenting your case at the hearing
- Helping you file the annual report with the court after becoming a guardian
They may also support you and your child in exploring the potential option of supported decision-making.
2. Your Family Is Moving Out of State
When you move to another state, your special needs planner can help you navigate differences in state laws.
Moving states could affect your loved one’s eligibility for benefits and how much they receive. States can differ in implementing Medicaid, SNAP and how services are delivered.
Your special needs planner can assist by researching the laws and benefits available in your state and helping transfer your child’s benefits. You will likely also need to hire a new attorney in the state where you are moving.
If you are the guardian of someone with special needs, you’ll need the court’s permission to move and transfer the guardianship to the new state. Working with the court, your attorney can help you demonstrate that the move is consistent with your loved one’s best interests.
3. Your Family Is Facing Financial Changes
Financial changes can impact your special needs plan. A study by the RAPID Project found that families of children with disabilities reported experiencing more financial challenges.
Your special needs planner can update your special needs financial plan to ensure it reflects your family’s needs, goals, and financial resources. This may include the following:
- Adjusting budgets
- Revisiting investment strategies
- Modifying trust arrangements
- Avoiding taxes
- Safeguarding public benefits
For instance, if you can no longer fund a special needs trust, your planner can help you find alternatives.
4. A Parent of a Child With Special Needs Has Died, Retired, or Developed a Permanent Disability
A person with a disability who became disabled before age 22 may receive SSDI through a parent’s work record when a parent passes away, becomes disabled, or retires. According to the Center on Budget and Policy Priorities, 1.4 million children receive SSDI benefits based on parents’ work records.
Your special needs planner can help protect your child’s interests while obtaining SSDI benefits in several ways:
- Helping determine eligibility
- Gathering evidence
- Completing an application
- Coordinating with an attorney who can appealing denials and provide representation at hearings
- Communicating with the Social Security Administration
5. Your Loved One With Special Needs Has Experienced Health Changes
Per HealthAffairs, individuals with disabilities have higher rates of chronic health conditions. When the health of your loved one with special needs changes, your special needs plan should adjust.
For instance, when someone recovers from a severe illness, they may no longer need someone to make decisions for them; guardianship may no longer be necessary.
If a person’s health has worsened, a health care proxy or guardian may be necessary. Your special needs planner can assess the situation, provide advice, and aid you in creating a plan.
When someone with a special needs plan in place passes away, your attorney can help with the legal issues that can overwhelm families following the death, including:
- Paying off government liens
- Repaying Medicare or Medicaid
- Handing the funds in the person’s special needs trust and estate
When your situation changes, don’t wait to contact your special needs planner. They can be invaluable in navigating through the challenges associated with a variety of life changes.