When a family member has a disability or special needs, life demands more from you, as caregiver—emotionally, physically, intellectually, and financially. Developing a lifetime plan can help you prepare for the predicted and navigate the unexpected.

What is a lifetime plan?

It’s a plan created for the lifelong care of your family member with a disability or special needs—especially after the caregiver is no longer in the picture—and looks at all aspects of life from a personal, legal, and financial perspective. Developed over time, it changes to adapt to new circumstances and needs. While the plan focuses on your child, it will benefit your entire family, as well.

The plan addresses four life stages.

  1. birth to age three: diagnosis and early intervention
  2. Age three to 22: school years, the Individual Education Plan (IEP), and transition
  3. Age 22 and beyond: rest of life
  4. life after the caregivers’ deaths

Beginning the planning process

After receiving a diagnosis of a child’s disability or special needs, families may need considerable time to accept and adjust to their new reality. However, once your family is ready, using the lifetime planning stages will help you evaluate your current financial picture and set goals to meet future needs.

Imagine how your child’s needs might transition over his or her lifetime. Examine your spending habits, create a budget, anticipate how expenses will change, and establish an emergency account. Review all your accounts and policies that have beneficiary options and ensure beneficiaries are appropriately named. Naming your child with a disability or special needs may jeopardize his or her eligibility for social security benefits.

Create your plan with professionals—such as a special needs attorney, financial advisor, and accountant—who are trained to serve the disabilities and special needs community. They will know the laws affecting you and the financial options available. They’ll also help ensure that all the elements of your plan work together, with legal documents drafted properly, so one doesn’t invalidate another.

Here are considerations to help you create your plan.

Life Continuum Stage 1

Birth to age three (diagnosis and early intervention)

Build a network
Benefit from the experience, information, resources, and support you’ll find in the community. Reach out to friends, family, other families facing similar situations, your school’s special education staff and special education advocates, medical professionals, spiritual advisors, social services case workers, and organizations such as the Caregiver Action Network (opens new window).

Employment
Parents may find it more practical for one to stop working to care for their child, rather than hiring caregivers and managing time off from work for emergencies and medical appointments. A financial advisor can help you adjust to a single-income household, if this is your goal.

Learn your rights
Knowing your rights makes you better able to achieve your goals. Begin with these:

Early Intervention
Learn about state and county early intervention and disability programs and services such as physical and speech therapy, counseling, assistive devices, and more. Parents of children under age three who have concerns about their children’s development can ask their pediatrician for a referral to an early intervention program for evaluation. If eligibility for early intervention is established, an Individualized Family Services Plan (ISFP) will be prepared.

Letter of intent
The Letter of Intent (LOI) is an ever-changing document that compiles personal, medical, financial, and social information about your loved one and provides practical and vital information for anyone who may care for them, when the original caregiver no longer is able to do so. A letter of intent also allows families to capture the vision for their loved ones’ future.

Insurance
Insurance policies (life, auto, homeowners, medical, prescription, and more) are a fundamental part of a life care plan and benefit everyone in the family. Life insurance policies can be used to fund a special needs trust or leave a legacy for other children, family members, and even charitable organizations. Pay particular attention to titling and ownership of policies, especially who is named as beneficiaries.

Government benefits
Many programs and services may benefit your family, such as Supplemental Security Income (SSI), Social Security Disability Insurance (SSDI), Medicare/Medicaid, Extra Help prescription program, Children’s Health Insurance Program, Child Disability Benefit (CDB), and more. Take the Benefits Eligibility Screening Test (opens new window) to determine eligibility.

Retirement savings
Parents” retirement savings should be kept separate from the savings for their child’s future life plan (if possible). A carefully crafted a lifetime plan that addresses each of the life stages will help ensure that a child’s living expenses are covered by their own earnings, savings, investments, or retirement account, rather than the parent’s retirement savings.

Legal instruments
Meet with a special needs attorney to discuss and review (or create) wills, medical directives, powers of attorney, and trusts. Be sure any inheritance bequeathed to a child with a disability or special needs does not put at risk the financial strategy created for them.

 

Life Continuum Stage 2

Age three to 22 (school years, Individual Education Plans, transition out of the school system)

Education
Public schools are mandated to provide education and accommodations for children with disabilities and special needs. Parents will work with special education professionals in their school district to develop an Individualized Education Program (IEP) to help their child succeed in school. It’s updated throughout the years and includes services for transitioning into adulthood. If they choose a private school for their child, an accountant should be consulted to see if they’re eligible for any tax breaks or expense write-offs.

Will the child continue on to college? Many offer supplemental services to students with disabilities or special needs. Other educational and training programs are also available. Research options and be sure to plan for the educational expenses of all children in the family.

Guardianship
Children who will need help making life decisions in the future may need a legal guardian when they reach the age of majority (age 18, in many states) or when health issues make it necessary. Also consider naming successor guardians who would assume guardianship, when original caregivers no longer are capable or available to do it.

Life Continuum Stage 3

Age 22 and beyond (rest of life)

Special needs trust (SNT)
SNTs can pay for certain living expenses that a loved one with a disability or special needs will have during their lifetime. There are different types of SNTs, and they have many sources of funding: generous gifts from friends and family, as well as inheritances from wills, life insurance policies, or other accounts or policies that are directed to the trust. Funds in a special needs trust typically won’t be counted when qualifying a child for government benefits. Unused funds, depending on the trust chosen, may be able to be bequeathed to others. A specialized attorney can explain the benefits of having an SNT and answer outstanding questions.

Socialization and recreation
Socializing enriches lives. Social and recreational opportunities may come naturally during the school years but take conscious thought and planning during adulthood. Building recreational costs into the budget for the entire family, including for a loved one with a disability or special needs throughout their lifetime.

Life Continuum Stage 4

Life after the caregivers’ deaths

Housing
Before a loved one finishes high school, consideration should begin concerning where they will live during adulthood. Options include an apartment added to the family home, a separate apartment or home, an assisted living residence, a home established with other loved ones of adult children with disabilities and special needs, and more. Residential needs can vary during a person’s lifetime, and options for persons with disabilities and special needs continue to evolve.

An adult loved may want to work when they are old enough. Investigate local organizations and businesses offering programs to help adults with disability or special needs find and keep a job, including job coaching and on-the-job support.

If an adult receives needs-based government benefits, accumulating assets of $2,000 or more may jeopardize eligibility for those benefits. There are also income limitations for each benefit program that need to be considered. Even if a family hasn’t applied yet, planning ahead is advised, just in case government benefits may be needed in the future.

Transportation
Consider what transportation needs may be for school, employment or recreation over the course of a lifetime and build a plan that will help cover the costs.

Adult Day Services
State and local organizations offer day programs that include socialization, cultural activities, and health and personal services.

Plan well, live better

A holistic plan developed taking into consideration each of the stages in a child’s life who has a disability or special needs can maintain and improve a family’s lifestyle and give loved ones with a disability or special needs a lifetime of support and financial security.