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Helping your loved one gain independence

The most important voice in the planning process should always be the person for whom the decisions are being made. While it’s important to consider your loved one’s abilities and capacity to care for themselves, they should also be given the opportunity to voice their desires, dreams, and vision to whatever degree they’re able. You and your broader support network should always strive to include your loved one in the decision-making process in whatever capacity possible.

Identifying the correct level of independent living arrangements

While it might be tough to imagine total independence for your loved one, resources are available to help support whatever level of independence is right for them. You may choose to have them live with you, in a community-based setting, or in some other living arrangement.

Consider the following in choosing the right living arrangement: 

  • The level of daily care your loved one needs 
  • The safety of your loved one and those around them 
  • The financial impact of having them stay home rather than living elsewhere 
  • Your own capacity 
  • The impact on other family members

Aging out of the public school system

There are programs and services available to help you and your loved one after public school is no longer an option. The federal Individuals with Disabilities Education Act (IDEA) covers education through age 22—the point when someone ages out of public schools. As your loved one moves on from public school, you may find yourself wondering what's next, searching for support services, and planning for a successful transition into adulthood.

If your child has an individualized education program (IEP), they should also have a transition plan to help you and your care team identify their needs and preferences. The transition plan, which should be in place by age 16, generally includes achievable and measurable milestones in areas such as life skills, vocational skills, social interaction, and recreational activities. Transition plans for your loved one can be supported by various services, including nonprofit companies, local and state governments, or for-profit companies.

Be sure to do your research to understand what’s available and what fits your loved one’s needs best. Start by searching online or connecting with other caregivers to get an idea of the possibilities. Consider reaching out to experts in the field, such as case managers or social workers, disability-specific nonprofits, or government agencies (for example, Developmental Disability Board and Bureau of Vocational Rehabilitation).

Services usually fall into one of these categories: 

  • In-home care. Skilled nursing and residential services 
  • Vocational programs. Job coaching, education and skills training, or sheltered workshops 
  • Social and recreational. Community-based day programs or special events 
  • Transportation. Assistive services, travel, and training
  • Respite care. Short-term, temporary relief to those caring for family members who might otherwise require permanent placement in a facility outside the home

Funding for these services can come in many forms, including private insurance, Medicaid, grants or nonprofits, or out-of-pocket payments. Many of these services have waiting lists, particularly those publicly funded, so it’s important to apply early if possible.

Managing financial decisions after age 18

Your loved one will likely need some help with making financial decisions, both big and small.

Depending on the nature of their disability, financial assistance needed after age 18 might range from intermittent support to appointing someone else to manage finances on their behalf. However, if you believe that having someone else oversee their finances would be in their best interest, consider applying to become your loved one’s legal guardian, conservator, or power of attorney. It’s also common to appoint another family member or someone close to the family to serve in this capacity.

The powers and duties afforded to such court-appointed positions vary from state to state, so be sure to discuss with an attorney which choice is best for your situation. Also consider seeking professional guidance from a tax advisor, financial advisor, or government agencies. Remember, once your loved one reaches the age of majority (which is 18 in most US states), they’re legally considered an adult. This means you’ll no longer be able to manage their financial affairs (or make health care decisions) unless you’re appointed by a court to one of these positions.

Understanding continued health care coverage

As your loved one transitions into adulthood, they may lose access to some services while becoming eligible for others. Be sure to keep in mind important milestones that affect your loved one’s initial or continued eligibility for health care coverage.

Medicaid. Eligibility usually starts at age 18. However, in most states, children who get Supplemental Security Income (SSI) payments also qualify for Medicaid.

Medicare. Eligibility typically begins after receiving Social Security Disability Income (SSDI) for 24 months. At age 18, a child who had been receiving SSDI benefits as a minor on their parents’ Social Security record may be eligible to continue receiving those benefits as long as they still are disabled.

Most private insurance plans. Children can typically keep coverage under their parent’s plan until age 26. However, if the child’s “chiefly dependent” on the insured parent for support and maintenance, many states and programs allow a dependent to remain on their parent’s health insurance plan beyond 26.

If you’re unable to secure continued health care coverage for your loved one with these options, you may be eligible to enroll in a private health plan through the Affordable Care Act (ACA) Marketplace. Subsidies may be available to reduce your costs, these are based on your income and household size. Learn more

It’s important to research the details for your state and insurance plan to see which is best for your loved one’s health care needs.

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This information is general in nature and provided for educational purposes only.

Fidelity does not provide legal or tax advice. The information herein is general in nature and should not be considered legal or tax advice. Consult an attorney or tax professional regarding your specific situation.