Aging Parents Caring for Their Adult Children With Special Needs

 The scene is becoming more familiar in communities across the country. An aging parent, usually the mother, weeps bitterly as she is forced to surrender custodial care of an adult child with special needs. After caring for a loved one for fifty years or more, separation can be excruciating. However, the mother is now in her late eighties and experiencing health problems which preclude her from continuing as the primary care giver. Parents of special needs children realize this day is inevitable. Early on in the process a decision was made to keep the child in the home, no matter what the costs. Those costs involve the aggregate total of emotional, financial, and time investments required to provide a loving and stable home environment. Life for the children in these situations is no cakewalk either. Their lives are often characterized by isolation and uncertainty, not to mention being misunderstood at every turn. The “child” in this situation is now approaching sixty and also realizes, on some level, change was bound to happen. Two lives intertwined by an unbreakable cord, must now part according to life’s epic design.

With the proliferation of Autism Spectrum Disorders rampant in society, millions of parents will face this scenario in the not so distant future. Although there are differences from past generations, the family dynamic hasn’t changed. The fundamental question for parents of special needs children is, “Who will care for my special needs child when I’m unable to or when I die?” In response to that question, the obvious answer would be siblings or some other family member. But upon closer examination, the obvious choice may not be in the best interest of the person with special needs. In an age of blended families and non-traditional marriages, families can be the least desirable place for a person with special needs. Moreover, stability should be the number one priority when making an important decision such as determining place of residence. Family members are not always in a financial position to assume the role of a surrogate parent. Depending on the medical needs of the special needs individual, relocating may not be a viable option for many families in this situation.

There are high functioning people with autism or asperger’s syndrome capable of living independently with a solid support system. Some parents are purchasing a condo or apartment with the intent of making it the child’s primary residence at some point in the future. The greatest advantage in utilizing this strategy is the security of knowing your child will have a place to live when you’re no longer around. The fact that you can also leverage your tax position doesn’t hurt at all either. The vast majority of people with autism, however, will require some assistance from family or a facility designed to provide direct care. Finances are a major consideration when discussing nursing home or assisted living arrangements. This option usually means qualifying for medicaid since medicare does not cover long term care expenses. Last, but certainly not least, there is the sticky age 65 requirement involved with medicare. That having been said, we come full circle with the issue of growing older and caring for special needs adult children. After all is said and done, we love our children unconditionally and acknowledge the day of separation that is sure to come.

 

 This post was written by a guest blogger George D. Williams, CFO of InfoPAC. George has written several published online/offline articles including, “The Evolution of the Retirement Crunch.”

 

Reflecting

11 years ago this past Saturday to be exact, my wonderful son was born, and life as I had known it changed. My husband and I new that having children would make a difference in our lives. Back then we didn’nt know what we later came to know as the World of Autism.

All during my pregnancy I prayed for a healthy baby boy, and an obedient child. I also worried about being a good mother to my son up to the time of his delivery which was by C-section. The plan for the C-section was for me to be awake during the delivery but the stress I placed on myself caused me to black out and miss the whole birth of my son.

Anyway, it’s been 11 years since that day, and I must say it’s been a wonderful, challenging, and different experience than I had dreamed of. I had suspected that something was wrong or different with our infant son. Then, finally when he was 11/2 I told the doctor I thought Nathan was autistic. Of course the doctor said no way because Nathan had great eye-to-eye contact. After much research and further evaluations we were told our son was autistic. Autism-what did that really mean? We didn’t know much about autism even though we are both in the medical field. But we were very determined to find out all we could about autism and to make sure Nathan got all the therapy he needed to make him successful in reaching his highest optimal level.

Since Nathan’s diagnosis of autism, and with prayers and therapy Nathan has made wonderful gains. Sometimes he surprises us when he makes new gains. My husband and I let Nathan develop at his own pace, without looking for “quick cures”. It’s great to just see him blossom before our eyes, I think a cure would take the joy out of seeing him grow into his own wonderful self but I don’t know? Then, it could be a blessing we have waited for. Right now we all have just learned to live with autism, and we’re curious to see what the next 11 years God has in stored for us.

Evolution of the Retirement Crunch

 

The concept of retirement has changed significantly during the past decade. Approximately 70% of baby boomers surveyed indicated they plan to continue working beyond age 65. Due to longer life expectancy, retiring at 65 is no longer a realistic goal for the average American. For the first time in history we now have four generations involved in the workforce as older Americans balk at the prospect of twenty or thirty years of life on retirement income. More and more people in their 70’s, 80’s, and even 90’s are still on the job – many of them working full-time. The tendency is to relax and tell ourselves we have plenty of time. Procrastination is easy when it comes to retirement planning, because it seems so far away. The reality, however, is that America, along with other industrialized nations, is rapidly aging, while retirement planning tendencies are changing little. Don’t get too comfortable because the object in the rear view mirror is your mortality approaching at warp speed! The age of 80 has become the new benchmark for many seniors to punch the last time clock, replacing the traditional retirement age of 65. Even at age 80, there appears to be an underlying anxiety over the possibility of “outliving” nest eggs. With ominous clouds surrounding government programs such as Social Security, Medicaid, Medicare, and Low Income Housing , the road ahead could be a bumpy one indeed for the retirement grasshoppers who have coasted through the summer, hoping winter will never come. There are many older workers who continue on the job because they really love what they do and are quite good at it. But make no mistake, there is a vast difference between fulfilling a higher purpose in life at age 95 and working to pay for prescription medications and food. Grim survival is far less fun. Recently AARP conducted a study that yielded some alarming results about older workers in the workplace in the coming decade. By 2017 analysts predict 11 million workers who have reached age 55 will be active in the workforce. Another 7 million people age 65 will still be on the job. However, the eye popping statistic forecasts an estimated 2 million people still on the job having reached age 75. (And you thought YOUR evening commute was rough!) This unprecedented trend is likely to continue as younger members of the baby boomers juggle health care concerns, caring for aging parents, and the erosion of corporate pension plans. Not only are traditional pensions disappearing, but health benefits for older workers and retirees are often limited or completely non-existent. It is certainly not inconceivable to have five generations ranging in age from 18-95 working side by side, only a few short years from now. While there are isolated instances of this occurring now, expect to see this type of scenario becoming commonplace. The longevity trend continues to escalate, causing a need for societal and personal response. Failure to plan ahead means that your retirement is likely to be years later than your parents’ retirement. Early preparation can help to create a radically different picture. Good financial management can aide couples and individuals in reducing the necessity for staying in a difficult job environment long after the body has become unsuited to the strain. Plan early, and those added years are full of choices, instead of being a burden. Written by George D. Williams, BS,MS,CO-Owner of InfoPAC (Information for Parents of Autistic Children. Helping people develop successful strategies to help parents and employers deal with the economic impact of autism on society.