What is going to happen to my child when I die? That is probably
the scariest question a parent can ask themselves and especially terrifying for
a parent of an Autistic child. A friend of mine once said "I believe it is
every mother's prayer is please Lord let me live one day longer than my
Autistic son or daughter." So what does this look like? What happens and
what are the options?
The National Autistic Society conducted a survey of approximately
450 children and adults with Autism, as reported by The
Child-Autism-Parent Cafe. They discovered that 70% of adults with autism
are unable to live independently, of those 49% live with family, and 32% live
in residential care facilities. Only 3% of adults with Autism lead completely
independent lives. Six percent of adults with Autism hold a job, either full
time or part time. These alarming statistics repeat themselves around the
world. The quality of life for our kids is strongly questioned by aging
parents, caring for their growing children. In 2013 approximately 50,000
children with Autism turned 18. The public school system only provides services
until the Autistic child turns approximately 21. In 2016 there will be a flood of
unserviced individuals with Autism in our communities. Their families will be
struggling with how to properly care for them and it is likely they will be
strongly financially impacted.
In 2010 the average cost of long term care in the United States was
$3,293 per month in an assisted living facility, according to the US Department of
Health and Human Services. That means that in one year a family could pay,
on average, $39,516 for assisted living care. According to The World Bank,
the average life expectancy of an adult in the United States is approximately
79 years. So if an Autistic child goes into assisted living at 21 years-old,
when school system aid stops, and lives a fairly healthy life, a family can
expect to pay approximately $2,291,928 for assisted living costs, if rates stay
the same. This of course does not include costs for doctors, therapists, and
any other living expenses.
The US Department of Health and Human Services estimates, on
average, an in home health aide costs $21.00 per hour. If they work five days a
week for eight hours a day, excluding weekends, a family can expect to pay
approximately $3,528 per month and $42,336 per year. An in home health aide,
over a lifetime of care, from the time the patient turns 21, will cost a family
approximately $2,455,488.
These services are grossly out of reach for most Americans.
According to the Social Security administration the national average
wage in 2012 was approximately $44,321.67 per year. Per month, the average
American earns $3,693.50. So what do you do? You're not rich, how can you
afford to pay for long term care? First of all try getting assistance through Medicaid. Every
state is different and some offer programs through Medicaid. Please see this
comprehensive list compiled by Medicaid of the state
summary profiles, it will list what services Medicaid offers per state. Be sure
your loved one has applied for SSI benefits. These can help immensely with any
expense associated with their care. Be sure to research your specific state and
the programs they offer. Sometimes there are private companies that offer
grants and scholarships that will be worth considering applying for, both on
the state and nationwide level.
So, now that we have dealt with the scary and overwhelming
finances and discovered some tactics to overcome them, what options are
available?
Adults with Autism have many options when deciding to live away
from home. They fall into six categories, which we will now discuss.
Independent Living- According to a June 2014 article in Disability
Scoop only 17% of individuals
with Autism from the ages of 21-25 have lived independently compared to 34% of
their peers with intellectual disability, as reported by the journal of Autism.
Independent living is just that. The individual lives in an apartment or home
on their own, or with roommates. They are solely responsible for their own
money management, safety, transportation, self hygiene, grocery shopping, etc.
Supported Living- The participants in a supported living arrangement live in their
own apartments, but are assisted by a worker in areas of self care and social
planning. These are like group homes, since common areas are shared, but differ
since the individual patient has more freedoms. Staff is usually available all
day, every day in case of crisis or other need.
Supervised Group Living- This is a group home. Individuals placed in group homes
are placed with other individuals who also suffer from the same disability.
These patients are under constant supervision. Group homes can be found in
residential areas and appear to be a typical family residence. The staff is
made up of specially trained professionals that assist with daily living and
social activities.
Adult Foster Care- I personally had never heard of this option until writing this
article, though many articles state it is a common choice. These individuals
live with a foster family. These arrangements are as permanent as possible and
this family is dedicated to the sole care of an individual. They are reimbursed
through the government. They may not be trained in social skill development or
trained in specific Autism therapy tactics.
In-home Care- In home services are provided when the Autistic individual lives
at home with their own family or friend. In home services include companions,
housekeeping, therapists, and health service professionals. It may also include
someone to provide personal care; usually the family member or friend will play
this role.
Respite Care- Some individuals with Autism remain in their parent's home long
into their adult lives. Respite care providers come to the home and provide
support to the parents, allowing them to conduct their own personal,
recreational, or social activities. Essentially they are adult babysitters, who
allow the caregiver time to conduct their personal activities. I have seen some
respite care facilities that will spend a night or two at the home with the
Autistic individual, allowing caregivers to take a short vacation.
For more information please see the following articles:
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