Planning for a Child with Special Needs

Planning for a Child with Special Needs

Establishing a financial plan for a family that cares for a child with special needs can be a very complex task. The nature of the disability, resources available, long-term prognosis, as well as the general health and temperament of the disabled person are all significant issues which must be carefully considered. In most situations there are many additional considerations to identify before addressing them.

Before becoming a parent, most people likely have certain preconceived notions about the natural transition of a child into adulthood and the approximate timeframe for reducing parental control. In caring for a disabled child, parents may feel as if all of the rules have changed and find themselves without a road map of what life should or may be like going forward.

Establishing Long-term Care

Caring for a disabled adult child in the home may not be practical long-term and could become very difficult as parents age. Typically, families also desire their disabled adult children to develop some level of community integration regardless of the level of disability. For some individuals that may mean moving out of the family home and into a community or group home.

Finding the right group home or institution can be a lengthy and overwhelming process, and once selected may also have a significant waiting period. Starting the search early for a good home is very important. The first step should be a candid assessment of the future needs and limitations of the disabled individual. We find that the candid assessment is one of the most challenging steps as it can be difficult for parents to face the possibility of not providing care throughout the child’s lifetime. They may also have a difficult time with the likelihood that the child will not “grow out of it.”

In looking for the right group home, the child’s needs and behaviors will be top considerations. A child may need the services provided at a facility that you have identified but the facility may be unwilling to take the child if the child exhibits aggressive behavior. The child may also have medical needs that exceed the facility’s capability.

We recommend asking the child’s current medical team or therapist about the realistic long-term needs of the child. Ask if they have any knowledge of facilities you could visit that may provide an appropriate level of care when the transition time comes.

When you visit the homes you are considering, discuss your child’s diagnosis and behaviors. Explain your child’s condition and needs completely, and then be prepared to ask the following questions.

• Does your facility have programs that will benefit my child?
• What are your treatment methods?
• Have you worked with clients with similar situations to my child? Is so, what was the outcome?
• What is the average resident age?
• How would my child fit in with the other residents of your home?
• Are residents ever separated by gender for activities such as sleeping, recreation, meals or groups?
• Do you have any concerns about my child's integration or participation in your program?
• What would be a realistic successful outcome for my child?
• Is there a waiting list for admittance?
• What are the typical costs for care?
• Do you accept Medicaid?
• Are programs for financial assistance available through Mental Health Mental Retardation (MHMR) or other sources?
• Is there a waiting list for financial assistance?
• Does your admissions group assist with application for financial assistance?
• What type of plan for communication is there between the treatment team and parents and how does it work (e.g., phone, email)?
• What type of access do we as parents have to the therapist or attending physician?
• What type of expectations would the facility have for family participation during the child's stay?
• Is there a recommended visitation program?

Helpful Programs to Consider

The programs listed below may be available to disabled children/adults provided that they meet eligibility requirements and are disabled to a degree which would prevent employment. These programs include: Traditional Social Security, Social Security Income, Social Security Disability Income, Medicare, Medicaid, Medicaid Waivers and MHMR.

Social Security may be available to disabled children of deceased or retired parents who are eligible for Social Security. Your disabled child must have been declared as disabled prior to reaching age 22. Social Security eligibility also allows individuals to be covered for Medicare.

Social Security Income is a needs-based program which can serve disabled individuals who have both low income and low asset base. The Social Security Income program is a gateway to Medicaid eligibility. For children under age 18, eligibility is based on family resources and income unless it is gained via a waiver program (see below).

Social Security Disability Income benefit is for disabled workers. Disability income is based upon payments into the system. Workers who become disabled prior to age 30 may qualify with fewer credits than older individuals. After two years on Social Security Disability Income you generally also become eligible for Medicare.

Medicaid Waivers and Mental Health Mental Retardation may provide a number of services for individuals who are mentally disabled. Medical Waivers and Mental Health Mental Retardation programs and benefits vary by county in Texas.

Medicaid Waivers are programs which are designed to provide benefits for need-based programs while waiving certain income/asset tests. These programs offer resources and entry into Medicaid. The resources are generally available if your child meets the criteria for care in an institutional setting. Prior to the Medicaid waiver programs, a child was only eligible for Medicaid if parents met the income/assets test or the child was left by their parents in institutional care for more than 30 days. Waivers allow you as a parent to arrange for care similar to the care provided in an institutional setting but your child receives care at home rather than an institutional setting. These programs are offered through the state (your state of residence) but there is a lengthy waiting period (5-7 years) for most waiver programs. Programs are available for both children and adult disabled individuals. Waiver programs vary by state and both benefits and eligibility vary by program. As such, the candid evaluation of your child’s current and ongoing needs is also an important element before applying for these programs.

Estate Planning