Planning tends to clear the path for long-term success. Spur-of-the-moment decisions work for simple pursuits like trying a new restaurant. But major endeavors like raising kids, especially children with special needs, benefit from thoughtful strategies such as life care planning.
Setting the Stage for Growth and Success
The earlier you start a life care plan, the better. Beyond estate planning, it takes a broad view of your child's future from their education to their lifestyle and care costs. As you both age, you may update the plan. To cover all the bases, involve an attorney with knowledge of special needs planning, a financial advisor, and healthcare experts.
- Financial planning: A special needs trust supplements Medicaid and other government benefits and preserves your child's eligibility for them. Also, Maine and other states offer ABLE accounts with tax savings for people with disabilities. They cover disability-related expenses without affecting eligibility for public assistance. Qualified beneficiaries must have become blind or disabled before age 26. Available in Maine only through Bangor Savings Bank, these accounts have annual deposit limits. These accounts are often paired with special needs trusts.
- Health and routine care: Choose care providers, support services, and assistive devices based on your child's needs. Create a letter of intent as a roadmap for medical care, their daily routine, and other lifestyle aspects, especially during major life changes.
- Education: Nurturing and supporting your child's education prepares them for more independence. An Individualized Education Plan (IEP) or a similar program from your local school district can tailor their learning to their needs and abilities. Schools must notify parents of any plans to evaluate a child or to change an IEP.
The Special Needs Alliance suggests that by age 15, your child's IEP should focus on the academic, social, and life skills they will need to enhance their independence. This can include fostering their growth through routine, structure, and community involvement. At this stage, if possible, involve your child in the planning process.
Supporting the Transition to Adulthood
Questions to ask to prepare your child with a disability for adulthood:
- Will they live in a group home or a supported apartment?
- Do they want a career?
- What kind of social life do they want?
Plan for changes in support services after high school, which vary by state. Options include:
- Career training through Medicaid waiver programs and employment opportunities through state disability services.
- Community involvement and activities, including day programs, for structure and a routine.
To protect their interests when they reach adulthood, assess the need for a guardian and powers of attorney for financial, educational, and health-care decisions. Review your estate plan accordingly.
Adulthood: Continuity of Care with Aging Parents
Update your adult special needs child's life care plan and consider your long-term care planning, too.
As they age, parents of special needs children can face illness, disability, or other issues that reduce their caregiver role. To prepare for change, introduce your child to new caregivers or living situations, such as staying with other relatives. For children without family caregivers, plan for their long-term care, including housing and health-care options (such as group homes or long-term care facilities).
Every family's situation is different, but early planning can help protect your child's future. It also prepares others to provide care – if you can't – to let your child live their best life.
For help safeguarding your special needs child's future, contact us online or call (207) 377-3966.
