We’re all getting older. But that’s a good thing, a very good thing! Modern medicine has improved by leaps and bounds, and we have all benefitted. Even children with a genetic condition, like Autism or Down’s Syndrome. Special needs children used to have very short lives, but Modern medicine has added years to their life. Increasingly they will outlive their parents. If you care for a special needs child, have you planned for the rest of your child’s life?
In 1950 the average American lifespan was a mere 58. Today it is 78.7 years. By 2050 we will live to be 84. But that’s just the average. Some individual’s lives have improved even more! As recently as 1983, a child born with Down’s lived just 25 years. Today, that child will live to 60. That’s a whole extra life. In coming years your children will live even longer.
Medical breakthroughs also happened in reproductive medicine allowing women to have children later in life. Unfortunately, that means a much greater chance of having a Down’s child. A woman over 40 years old is 12 times more likely than a woman in her 20’s to give birth to a Down’s baby. As a result, the Down’s population has grown by 35% since 1990. A record 400,000 Americans have Down’s, and some experts believe that the official number uses outdated data. The real population could be much higher.
There are also 3.5 million Autistic Americans. Autism is a spectrum of symptoms rather than a single disability. Some are highly functioning, while others need constant supervision. With others somewhere in between. A recent study showed that the average lifespan for the Autistic is 54 years, 40 if there are significant mental dysfunctions. Yet, Autistic lifespans have also increased. With all of these increasing lifespans, no one has a plan for dealing with our aging special needs children.
If you are the parent of a special needs child, consider your own future. As time goes on, you will age, becoming more fragile and less capable. Gaps in your memory, a bit less flexibility in your joints, a slower step, declining vision, and hearing. By our late 70’s (or 80’s or 90’s?) we may need an assisted living facility. Few of us plan for old age in our 30’s or 40’s. Most of us wait until we are much older or some incident forces us to consider our mortality.
High functioning Autistic or Down’s childen may experience a declineby their 30’s or 40’s. Relatively minor disabilities and the diseases of age… diabetes, osteoporosis, stroke, heart conditions, Alzheimer’s… will take a larger toll. Just as we put off planning for our own old age, we will make even more delays in planning for our children. Parents need to make some very difficult choices, and soon. While you still can, develop a four-step plan for your children.
Decide: Parents need to decide how their children will be cared for, for the rest of their lives. Is your child living independently today? If the child lives with you, how long will you be able to serve as the primary caretaker? Will relatives care for your child when you are no longer able?
Acknowledge your limits and abilities. If you live to be 95, you may have Altzheimers or a disability that leaves you mentally incapacitated. Put your wishes into writing. Members of your family may have different ideas of how your children should be cared for, or may simply not know what you want.
Identify: Where should your child to spend the rest of their life? At what age or after what event would you consider placing your child in a full-time care facility? Have you thought about the specific qualities of that facility? Should the location be near you, so that you can visit? If so, is transportation and lodging near? If you are older and visits will be limited, should you consider locations in other states?
Older Americans are moveing from rural areas to cities. Healthcare and support facilities are concentrating in or near cities. Location dramatically impacts space, design, and cost. Higher land costs in and near cities ofnte mean less personal space. Facilities in rural area mean more travel time but also larger living space, a better “Welcome Center” for visitors, and the posibility of open spaces. You will need to balance accessibility with amenities.
Does your child have medical issues that require specialized medical staff and equipment? The facility itself does not necessarily need to provide every service, but services should be nearby. Few of us deal well with change, and Special Needs children react very negatively to changing where they live. You want your child to have a permanent, stable place to live and not move from facility to facility, especially later in their life. And, of course, you need to know what all of this will cost.
Assign: Will your relatives be involved in the care of your special needs children? Have you spoken with them or provided them with power of attorney? You should provide your wishes in writing. Through the years to come, questions may arise that your written words will help guide your child’s guardian.
Fund: Any medical care is expensive. Many Americans will be challenged to fund their own retirements. The average family has $60,000 in savings, but this is inflated by a few retireees with well funded retirement plans. A family that is exactly halfway between the riches and the poorest (the median) has just $5,000.
https://www.cnbc.com/2016/09/12/heres-how-much-the-average-american-family-has-saved-for-retirement.html
Then you need to start saving for your children NOW! Speak to financial experts so ensure that your method of savings does not interfere with social security or other governement programs. Without proper planning, any savings in your child’s name will be used first by a care facility, before governement money can be used.
Luckily, there is help. A new type of savings plan was created for families with special needs children. The Achieving a Better Life Experience (ABLE) Act of 2014 allows you to establish a private tax-advantaged savings account for your child’s long-term expenses.
Once an account is established, contributions accumulate tax-deferred and any earnings are tax free at the federal level when the money is used for qualified expenses. However, as of April 2016, only 40 states enacted ABLE laws. Bills are still pending in some states.
Conclusion: A growing number of parents will need to care for their adult and aging special needs children. Now, and after they have passed away. There aern’t enough options for parents today, but ABLE can help and other legislation will be developed IF enough parents contact their legislators. The care of these children is a complex issue, but with a little planning and a bit of activism it will be less of an issue for the coming generation.