Autism Resources: 10 Concerns for Parents
As families touched by autism know, there are unique challenges, needs, and unknowns which must be addressed. It can be a very emotional and scary time when a child is first diagnosed. Not only that, life-changing events begin to occur as the child grows to adulthood. The road ahead is demanding for parents and autism resources may be scarce depending on the individual’s age and what state you are located in. Here are 10 concerns that parents face for their autistic child which should be addressed as early as possible:
1. Health- Families with autistic children experience a far greater financial burden than families whose children have other chronic health conditions. This finding, published in the December 2008 issue of pediatrics, was based on a nationally-representative survey conducted in 2005-2006 involving approximately 40,000 children with special health care needs, including those related to autism. The survey found that parents of children with autism incur greater health care costs and are more likely to experience serious financial difficulty.
2. Government Benefits- Take time to learn about programs such as Medicaid, Social security Disability Insurance (SSDI) and Supplement Security Income (SSI). These will be critical when the child reaches 18 or 21 depending on which state you live in. Congress has stepped up in some areas; however, families need to take control of their financial requirements. Disability.gov can be an excellent resource.
3. Employment- Finding a job can be a major step towards independence for adults who have autism or special needs. Parents should seek out resources that will help their children assess their skills, identify employment goals, and find training and educational opportunities. Only about 20 percent of 16 year olds with an autism spectrum disorder have looked for employment.
4. Social Life- A plan should also be in place regarding recreational and social activity as well. Pal-o-Mine Equestrian has been a great therapeutic resource and tool for my sons.
5. Quality of Life- It’s every parent’s desire for their child to live a healthy, happy life. Regardless of their social status, level of education, religion or ethnicity, parental concerns over the welfare of their child are the same and are all-consuming. Parental concerns over learning difficulty, being bullied, stress-coping, and achievement were overwhelming more with autism spectrum disorders as opposed to other special need health issues.
6. Education- There may be special schooling requirements or tutoring by someone especially trained to meet the child’s needs. This may be in addition to regular education. Aides may be required for a child to benefit from regular or special education. Special instruction, training or therapy may be required also.
7. Financial Well-Being- The rising cost of caring for an autistic individual can be staggering. The Autism Society of America estimates that the costs of treating, educating, housing and providing other services for autistic individuals will reached $90 billion in 2010. This is primarily for adults on the autism spectrum. Based on the Center for Disease Control’s statistical trends, by 2016 these costs could approach $400 billion.
8. Guardianship- What will happen when the child gets older or if something happens to you, the parent? A guardian will make decisions for the child. It’s critical to choose the right type of guardianship such as “Will it be guardianship of the person or guardianship of the property?” What’s even more important is choosing the right guardian. Remember, this will be the decision for your loved one if you are not around! Only 40%, of parents with children or adults with autism spectrum disorders have a designated guardian for the child or even created a will.
9. Independent Living- Various options are available in this area. Some choices that are available can be adult foster care in a home with a family, independent living, group home living with a staff, support home living with the help of an aid.
10. Independence- 78% of parents don’t have an individualized life plan in place for their child. They worry whether that child will be able to care for themselves financially. Parents must become informed and proactive, taking the necessary steps to develop a plan-of-action designed to address their financial challenges both today and into the future.
In closing:
- Health
- Government Benefit
- Employment
- Social Life
- Quality of Life
- Education
- Financial well-being
- Guardianship
- Independent Living
- Independence
are concerns parents of autistic children face everyday. There are autism resources available, but with the growing number of children being diagnosed with this disorder, and the tightening of government budgets developing an individualized life plan will give parents much deserved peace of mind and will afford important protections for the autistic child or adult as well as other family members.
About Charles Massimo
Recognized as industry expert and guest speaker at national industry conferences, Charles Massimo is a published author and media subject expert on topics ranging from wealth/asset management to investment and financial planning for high net worth families, families with autistic children and closely-held businesses.