Parenting An Adult With Special Needs

older man making a plan of care for special needs adult child

You have been nurturing, teaching, and supporting your special needs child for many years, and now that they are an adult, you know their needs will change. As children age out of care settings and yearn for independence, there are many issues to plan for. Once your child reaches age 18, they may take charge of their own decisions about housing, employment, and other daily decisions.

Have A Plan

Worrying about who will care for your child after you are gone is a common concern for parents of special needs adults. As difficult as it may be, making a plan for your child after you are gone is an important and delicate step. Choosing who will be your child’s guardian and caretaker requires a great deal of communication and consideration. Regardless of whether it is a family member, the individual should have a thorough understanding of what may be involved when they take on the role.

The financial security of your adult child is important as well. The benefits your child receives from Social Security, Disability, and Medicaid may not cover all the expenses. There are several steps you can take to ensure the financial needs of your child are met including your own resources, life insurance policies, or trusts. Because of the limits on assets in place by government services, it is wise to discuss your plans with a financial advisor who is familiar with the concerns of parents of a child with disabilities.  You can discuss your concerns with a representative of BASCA or a similar agency and they will offer options, such as a planned gift to an endowment that will ensure the agency is able to care for your family member and future special needs adults in perpetuity.

Many parents of special needs children have set up a legal guardianship before they turn 18. You may wish to consult with an attorney who can help you petition the court for guardianship if you choose.

Determine the Level of Care Your Adult Child Needs

As your child ages, the level of care he or she needs may change. How and where your adult child is cared for may change over time from day programs to residential care. Review the available care programs and locations for your adult child and include your preferences in your plan. Be sure to provide this information to other caretakers and anyone you have designated to be a guardian in the event of your death.  Review these things frequently, as care options may change alongside your child’s needs.

Help With The Transition

As your child becomes an adult, he or she may wish to live independently. This can include living in a residential group home or having their own apartment. For those who are not able to live entirely on their own, BASCA provides in-home support. Attending day programs that provide your family member with intellectual and physical development is also a great opportunity for them to develop friendships and enjoy participating in meaningful activities.  Through an agency like BASCA your family member may choose to seek supported employment, where the agency helps provide transportation, discusses the types of work that may be available that your family member may be interested in.  The agency helps prepare them for work and assures the employer they will provide support whenever needed.

Keys to Success old fashioned keys and opened lock

Communication - talking with a community agency or the residential home caretakers regularly gives you the opportunity to make sure your child is doing well, as well as identify any needs they may have. It is also important to talk to your child about their living arrangements and any issues or problems they are having.

Daily Activities - assuring your child can take care of their basic daily living functions will help them succeed regardless of where they live. This not only includes eating, personal hygiene, laundry, and grooming but also showing an understanding of their own personal safety and medical needs. You want to be sure your child understands what to do if they begin to feel sick or need medications or supplies when they are away from you.

Patience - the time of transitioning into adulthood is difficult for every child. It signals many changes in what the child is feeling and experiencing. Parents, too, will transition to a new phase of parenting as their child begins to become engaged with new people and activities. This phase can be stressful for any parent, so take a deep breath and remind yourself that you have successfully raised your child to meet these challenges.

Self-Care - You have heard the old saying that you can’t pour from an empty cup, and this is especially true when it comes to the stresses inherent among family members of adults with disabilities. Relationships outside the family unit can dwindle away over time because parents are focused on their child’s needs. Having a good circle of supportive friends and family will help you through the challenging days ahead. Tending to your own physical and mental health needs is an important way that you can help your child. You could be a part of a Support group, or BASCA and other similar agencies provide respite care.

Resources

The Florida Department of Education website can connect you to state and federal agencies that provide services to adults with disabilities.

https://www.fldoe.org/academics/career-adult-edu/adult-edu/learning-disabilities.stml

The Florida Agency for Persons with Disabilities offers news about agencies and societies related to individuals with disabilities. It also provides a list of state resources available.

https://apd.myflorida.com/

Easter Seals Florida provides training, recreation, and educational services in the state. https://www.easterseals.com/florida/our-programs/adult-services/

Military One Source - This website offers support for military families with special needs adults.

https://www.militaryonesource.mil/family-relationships/special-needs/adults-with-special-needs/an-overview-of-adults-with-special-needs/