Before becoming a parent, most people likely have preconceived notions about the timeframe and natural transition of a child into adulthood. A family who is providing care and establishing a long-term financial plan for a child with special needs may realize that all of the rules that they planned on have changed. These families may find themselves without a road map for what life should or may be like going forward.
In most situations, there are many issues to identify before beginning to formulate a plan for the care of a disabled child. Some of the important considerations include: the nature of the disability, resources available (family and/or governmental), long-term prognosis, and the general health and temperament of the disabled person.
Establish Long-Term Care for Your Child
Caring for an adult disabled child in the home may not be practical long-term and could become very difficult as parents age. Typically, families may also want to help their disabled adult children develop some level of community integration regardless of the level of disability. For some, that may mean moving out of the family home and into a community or group home.
Finding the right group home can be a lengthy and overwhelming process and, once selected, may also involve a significant waiting period. We believe that starting the search early for a good solution 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 idea that the child will not “grow out of it” and be able to care for themselves one day.
In selecting the right group home, the child’s needs and behaviors will be top considerations. Your child may need the services provided at a facility that you absolutely love, but the facility may be unwilling to take your child if he or she exhibits aggressive behavior. Your child may also have medical needs that exceed the facility’s capability. To avoid these and other issues, we recommend that you ask your child’s current medical team or therapist what to expect for realistic long-term needs. Ask the professional if they have any knowledge of facilities that you could visit which may provide an appropriate level of care before the transition time comes.
When you visit care facilities, discuss your child’s diagnosis and behaviors. Explain your child’s condition and needs completely, and then be prepared to ask the following questions:
- What programs are offered by your facility 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 age of your residents?
- How would my child fit in with the other residents of your home?
- Are residents 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 and successful outcome for my child?
- Do you have 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?
- Will your admissions group assist with application for financial assistance?
- What type of plan for communication should we expect 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 for a Child with Special Needs
The programs listed below may be available to disabled children/adults provided they are disabled to a degree which would prevent employment and otherwise meet eligibility requirements. These programs include: Traditional Social Security, Social Security Income (SSI), Social Security Disability Income (SSDI), Medicare, Medicaid, Medicaid Waiver Programs and MHMR.
Social Security may be available to disabled children of deceased workers 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 (SSI) 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 access is granted via a waiver program (see below).
Social Security Disability Income (SSDI) 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 significantly fewer credits than older individuals. After two years on Social Security Disability Income, you would also become eligible for Medicare.
Medicaid Waivers and Mental Health Mental Retardation (MHMR) may provide a number of services for individuals who are mentally disabled. Medicaid 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 also may allow you as a parent to arrange for care similar to care provided in an institutional setting but your child could receive care at home rather than an institutional setting.
Waiver programs are offered through the state of your residence. Unfortunately, there is a lengthy waiting period (5-7 years) for most waiver programs. Programs are available for both children and disabled adult 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 with a Child with Special Needs
We also recommend that your estate planning attorney be made aware that you have a child with Special Needs, as estate planning for that child’s needs may involve special provisions in your will, as well as in the estate plans of other family members. Effective Special Needs planning should only be handled by an attorney who specializes in this area of planning.
How We Can Help Your Family
The professionals at Kanaly have extensive experience in planning for the care of loved ones who have special needs. By partnering with you, we can work to identify and address the financial issues, allowing you to spend your time on the needs of your family. Please let us know how we can assist you.
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