Managing the Adult Years
Rearing a child on the spectrum is difficult enough. But planning for that child's adult years may be even harder to manage.
If you're worried about that challenge, you're probably right to be: As with other issues related to the spectrum disorder – treatment, intervention – more research needs to be done on how to support autistic adults so they can thrive and lead full lives.
That said, there is cause for encouragement: For one, the care your child is receiving now can go a long way toward ensuring he or she grows up to become a capable, if not completely self-reliant, adult. Although it's hard to predict if she or he will grow out of the spectrum completely, early and multi-pronged intervention will greatly help him or her navigate the world.
Nevertheless, it pays to plan ahead, whether your child has been diagnosed with severe autism or is considered high functioning.
Financials First
To start with, make sure your adult child has been signed up for any and all of the government benefits to which he's entitled, including Social Security Income (SSI) and Medicaid. Paying for his or her future needs can become expensive, and if your child is qualified for the aid -- which is determined by the Social Security Office by examining his or her monthly income (contact your local branch for more information) -- he or she has every right to avail himself of it.
Also look into your insurance plan to see if it will cover the steep cost of long-term care. Though you may encounter obstacles because of your child's pre-existing condition, consider switching to another carrier if the one you currently have offers lackluster benefits.
Be sure to make provisions for your child in writing. That means drawing up a will that clearly delineates what will happen to him or her – including who should be his or her guardian (check first with the person you name, of course) -- should you and your partner no longer be around to provide care.
If you have significant assets, consult a financial planner or estate lawyer who can help you set up a Supplemental Needs or Special Needs Trust that will specifically address how your child can benefit from your bequeathal without compromising any governmental aid. Financial experts can also advise you on the tax advantages of the Intervivos Special Needs Trust, which will allow your child to tap into it while you're still around.
And if you don't yet have a nest egg built up for your child's future, it's never too late to start; your accountant or financial planner can help you investigate the myriad ways you can begin to put away money.
Home Away From Home
Next, examine your child's options when it comes to adult living arrangements. If he or she is unable to live alone, you may want to start thinking about which establishment would provide the best fit.
For a more homey feel, a “skill development” home may be a good choice; it's usually the residence of a family that embraces people with disabilities. A “supervised group home” will foster your child's independence, while ensuring his or her basic needs – meals and housekeeping, for example – are met by trained staff members.
Adults who are profoundly autistic may need to enter a facility where they can be supervised and tended to around the clock. Though it may be heartbreaking to consider this option, it may help to know that many of them now provide excellent care and are not at all like the neglectful or clinical institutions of the past. The key, of course, is picking the right one for your child.
If you're worried about that challenge, you're probably right to be: As with other issues related to the spectrum disorder – treatment, intervention – more research needs to be done on how to support autistic adults so they can thrive and lead full lives.
That said, there is cause for encouragement: For one, the care your child is receiving now can go a long way toward ensuring he or she grows up to become a capable, if not completely self-reliant, adult. Although it's hard to predict if she or he will grow out of the spectrum completely, early and multi-pronged intervention will greatly help him or her navigate the world.
Nevertheless, it pays to plan ahead, whether your child has been diagnosed with severe autism or is considered high functioning.
Financials First
To start with, make sure your adult child has been signed up for any and all of the government benefits to which he's entitled, including Social Security Income (SSI) and Medicaid. Paying for his or her future needs can become expensive, and if your child is qualified for the aid -- which is determined by the Social Security Office by examining his or her monthly income (contact your local branch for more information) -- he or she has every right to avail himself of it.
Also look into your insurance plan to see if it will cover the steep cost of long-term care. Though you may encounter obstacles because of your child's pre-existing condition, consider switching to another carrier if the one you currently have offers lackluster benefits.
Be sure to make provisions for your child in writing. That means drawing up a will that clearly delineates what will happen to him or her – including who should be his or her guardian (check first with the person you name, of course) -- should you and your partner no longer be around to provide care.
If you have significant assets, consult a financial planner or estate lawyer who can help you set up a Supplemental Needs or Special Needs Trust that will specifically address how your child can benefit from your bequeathal without compromising any governmental aid. Financial experts can also advise you on the tax advantages of the Intervivos Special Needs Trust, which will allow your child to tap into it while you're still around.
And if you don't yet have a nest egg built up for your child's future, it's never too late to start; your accountant or financial planner can help you investigate the myriad ways you can begin to put away money.
Home Away From Home
Next, examine your child's options when it comes to adult living arrangements. If he or she is unable to live alone, you may want to start thinking about which establishment would provide the best fit.
For a more homey feel, a “skill development” home may be a good choice; it's usually the residence of a family that embraces people with disabilities. A “supervised group home” will foster your child's independence, while ensuring his or her basic needs – meals and housekeeping, for example – are met by trained staff members.
Adults who are profoundly autistic may need to enter a facility where they can be supervised and tended to around the clock. Though it may be heartbreaking to consider this option, it may help to know that many of them now provide excellent care and are not at all like the neglectful or clinical institutions of the past. The key, of course, is picking the right one for your child.
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