It has been over a month since I posted my last blog. I have been very busy with good things. One of them is I took my very first cruise. I never thought I would ever do it (Images of the movie The Poseidon Adventure, which I saw as a child, prevented me from ever considering a cruise), but a family wedding and the chance to see Europe overrode my fears of water. I am so glad because I will always look back on this trip as a truly wonderful experience. The past year and a half have been stressful for me and my family because my father-in-law was very sick. Unfortunately, he passed away in May. But this vacation cruise convinced me that this world is filled with so many wonders and experiences that a person should never give up hope that things can always turn around.
We traveled to Barcelona and Mallorca, Spain; Marseilles, France; and Florence, Rome, and the Amalfi Coast in Italy. It was a trip of a lifetime!
The staff on the cruise were so accommodating and eager to
help make the vacation as enjoyable as possible. I felt, “Yes! We deserve to be
pampered after all our years of hard work and struggles. Why not enjoy it.”
Another reason to celebrate is my second novel is in the proofreading stage. Like True Mercy, my latest literary effort took about four years to write and edit. Now I have to find a cover designer and decide how to distribute the novel. Unlike the first, my second novel is women’s fiction and the main theme is self-acceptance.
Months ago, I posted a rough draft of my second novel on Wattpad, an online community for writers and readers, and when I returned from my trip, I was pleasantly surprised to find more followers.
Surely, life can turn around!
I am also happy to report that hard-working special-needs advocates are beginning to see progress in their ongoing battle to support the autism community. Whether you like President Trump or not, you have to give him credit for extending the Autism CARES (Collaboration, Accountability, Research, Education, and Support) Act for five more years. The President reserved $1.8 billion dollars for this extension. In addition, the Autism CARES Act will require the Department of Health and Human Services to compile a report for Congress about the health and welfare of individuals in the autism community.
And that’s not all. Insurance companies in all fifty states are now required to cover on some level the treatment of autism that is deemed medically necessary, including ABA (applied behavior analysis).
I will most likely be only able to blog once a month from now on, but I am determined to write news of interest to my readers on a variety of topics, including the latest on autism, human trafficking prevention, inspirational stories, and book reviews.
The recent trend is to stop so-called
“institutionalizing” individuals with special needs. Policymakers
and journalists have latched onto the thinking that all special needs
individuals should integrate into the community. That is, they should
live in private homes for the handicapped and get busing to
work/activities in another location with cooperating medical
facilities nearby for their care.
Well, I am writing to tell the public
that this thinking does not work for all people, particularly those
with severe special needs. They need and should be entitled to
options.
I will use the residential housing
community Woods Services in Langhorne, Pennsylvania as an example.
The Philadelphia Inquirer plans to run a series of articles on
alleged abuse and neglect at Woods. While it is true that they and
other residential housing facilities suffer from a shortage of people
willing to work with individuals with extreme disabilities, Woods
Services does its utmost to provide housing and round-the-clock
staffing for each client. They provide medical and dental services on
campus, including a shift of nurses for all their housing units. If,
God forbid, there is a life-or-death emergency, a client can receive
immediate medical care, which helps prevent a condition worsening or
even death.
For the school-age population, Woods
has a state licensed private school on campus that operates the whole
year, providing special education and supports like occupational
therapy, physical therapy, and speech therapy. For non –verbal
clients, alternative communication devices like sign language and
voice output devices are also available.
For those over 21, Woods buses clients
to work sites on campus or out in the community, whichever is
appropriate for each client. Some of the on-campus work sites include
a coffee shop, a floral shop, and factory jobs. All positions include
a job coach.
All clients have on-campus
psychological and psychiatric services.
In addition, Woods provides trips like
going to the movies, the mall, and Philadelphia sports games all
through the year.
And no one is in danger of aging out.
People can live in this staff- and medical-supported residency
throughout their lifespan.
Politicians are supposed to serve and
represent the interests and needs of their constituents. Journalists
are supposed to report the news. Neither are experts in special needs
care. They should not decide or persuade the public that all
individuals with severe disabilities are suited for a
one-size-fits-all system. There is no system that is right for all
individuals—obviously, everyone has different needs and cannot
thrive with only one option.
One change I personally would like to
see in all group homes for special needs clients, and for nursing
homes as well, is more funding to increase the staffs’ salaries in
the hope of motivating more people to work in these residential
housing facilities. It takes a special person to work with people who
cannot take care of themselves through no fault of their own. They
are the unsung heroes.
Woods is unique in having a vigilant
staff. A few years ago, a client reportedly had a temper tantrum and
hid under a bus. The staff spotted the client and made sure he was
safe before the bus moved again.
Most people
cannot relate to the challenges of having a loved one with severe
special needs. But anyone could have a child, a sibling, or any other
relative who is born with a neurological disorder and that person may
require care at all times with no hope of ever living independently.
Family members need the peace of mind that goes along with knowing
their loved one is getting the care and services they require
round-the-clock. These families need places like Woods.
The increasing rate of autism should be everyone’s concern, not just those who have a family member with the diagnosis. At the present rate, 1 in every 59 children is diagnosed with autism. There is a spectrum according to the severity: those on the high end of the spectrum are able to function independently while those on the lower end require constant care and supervision. Any child could receive the diagnosis regardless of socioeconomic class, color, or religion. Anyone who feels it is not “their problem” may one day be in for a big surprise—if that person does not have a child with autism, then a sibling’s child, a niece or nephew’s child, or a grandchild could have this developmental disorder. Therefore, autism should be everyone’s concern.
National Autism Awareness month concept with puzzle or jigsaw pattern on heart with autistic child’s hands supported by nursing family caregiver
The following is a list of questions people may have. I will
try to answer them as clearly and succinctly as possible.
Q. What is autism? According to the website Autism Speaks (https://www.autismspeaks.org/what-autism), “Autism, or autism spectrum disorder (ASD), refers to a broad range of conditions characterized by challenges with social skills, repetitive behaviors, speech, and nonverbal communication.” As every individual is unique, autism affects each person differently.
Q. What are some telltale signs of autism? Signs include
Repetitive behaviors like hand flapping,
rocking, jumping
Inability to make eye contact
Speech difficulties
Repetition of words (echolalia)
Inability to participate in social interaction
Sensitivity to sounds, smells, and tastes
Trouble understanding the feelings of others
Agitation with schedule changes
Unusual mood patterns, sleep difficulties
Hyperactivity
Fixation on particular topics
Limited attention span
In my novel True Mercy, one of the main
characters is an eighteen-year-old man with autism named Adam. I include many
characteristics of autism in my portrayal of Adam like hand lapping, rocking, echolalia,
sensitivity to smells, unusual mood patterns, and fixations on certain topics.
Q. When do signs of
autism appear in children?
According to Autism Speaks, signs of autism may occur from
the first few months of life to as late as 2 or 3 years old.
Make eye contact,
such as looking at you when being fed or smiling when being smiled at
Respond to his or
her name, or to the sound of a familiar voice
Follow objects
visually or follow your gesture when you point things out
Point or wave
goodbye, or use other gestures to communicate
Make noises to get
your attention
Initiate or respond
to cuddling or reach out to be picked up
Imitate your
movements and facial expressions
Play with other
people or share interest and enjoyment
Notice or care if
you hurt yourself or experience discomfort
Q. What can parents do
if they notice these signs?
If a parent notices their child has developmental delays, it
is vital they seek the advice of their child’s pediatrician to find out if
testing is needed. The earlier the diagnosis, the sooner the child can receive
early intervention, which is critical for the child to make gains in their
development. Applied Behavior Analysis (ABA) is the therapy that has proven to
help children with autism make significant improvements.
Q. What are some
resources to get help?
I gathered some resources but this list is by no means
exhaustive.
The three main factors considered for these rankings include:
State
laws requiring insurance coverage
of ABA therapy (points were weighted based on age limit, coverage limit, and
types of insurers required to provide services)
If a state is part of
the ADDM Network (Autism and
Developmental Disabilities Monitoring Network, which estimates the number of
children living with autism and other developmental disabilities in various
places in the United States).
Grants available to individuals and families in the
specified state
Rank
State
Age Limit?
Coverage Limit?
ABA Therapy Requirement for
ALL Insurers in State
ADDM Network
Grants Available
1
California
No
No**
Yes
No
Yes*
2
Massachusetts
No
No
Yes
No
Yes*
3
Indiana
No
No
Yes
No
Yes
4
Colorado
No
No
Yes
Yes
No
5
Vermont
21
No**
Yes
No
Yes*
6
Maryland
19
No
Yes
Yes
Yes*
7
New Jersey
21
No
No
Yes
Yes*
8
Washington
No
No
Yes
No
No
9
New Hampshire
21
Varies based on age
No
No
Yes*
10
New York
No
$45K
Yes
No
Yes*
11
Oregon
No***
No
No
No
No
12
Connecticut
15
No
No
No
Yes*
13
Maine
21
$36K
Yes
No
Yes*
14
Pennsylvania
21
$36K
Yes
No
Yes*
15
Mississippi
8
No
Yes
No
No
16
North Dakota
21
No
No
No
No
17
Ohio
21
No
No
No
No
18
DC
No
limited to cost of similar therapy
No
No
Yes
19
Wisconsin
9
$50K
No
Yes
Yes*
20
Delaware
21
$36K
Yes
No
Yes
21
Arkansas
18
$50K
Yes
Yes
No
22
Minnesota
18
No
No
No
No
23
Nebraska
20
No
No
No
No
24
Utah
10
No
No
No
No
25
Wyoming
20
No
No
No
No
26
Illinois
21
$44,877
Yes
No
No
27
Florida
No
$36K, $200K lifetime
Yes
No
No
28
Georgia
6
$30K
No
Yes
Yes
29
Rhode Island
15
$32K
No
No
Yes*
30
South Carolina
16
$50K
Yes
No
No
31
Virginia
10
$35K
No
No
Yes*
32
Kentucky
21
$50K
No
No
No
33
Kansas
12
limits based on hours
Yes
No
No
34
Michigan
18
varies based on age
Yes
No
No
35
Oklahoma
9
$25K
Yes
No
No
36
South Dakota
18
varies based on age
Yes
No
No
37
Texas
9
varies based on insurance plan
Yes
No
No
38
Alaska
21
varies based on insurance plan
No
No
No
39
Iowa
21
$36K
No
No
No
40
Louisiana
21
$36K
No
No
No
41
Arizona
16
varies based on age
No
Yes
No
42
Missouri
18
$40K
No
Yes
No
43
Nevada
18
$72K
No
No
No
44
North Carolina
18
$40K
No
Yes
No
45
Tennessee
12
varies based on insurance plan
No
Yes
No
46
Alabama
9
$36K
No
No
No
47
Hawaii
13
$25K
No
No
No
48
Montana
18
varies based on age
No
No
No
49
West Virginia
18
$30K
No
No
No
50
New Mexico
19
$36K, $200K lifetime
No
No
No
51
Idaho
n/a
n/a
No Law Requirement
No
No
Multiple grants available for this state.
**Can’t exceed the cost of treatment allowed under the Affordable Care Act
(ACA).
***Must start treatment before age 9.
Idelle Kursman is
the author of True Mercy,
a thriller designed to bring awareness to two issues: families coping with a
loved one with autism and the human trafficking crisis. True Mercy is
for sale on Amazon, Barnes & Noble, IngramSpark, and Smashwords.
Need help with blog content? Please
contact me through my website, www.idellekursman.com.
The Autism Population is increasing and the children are becoming adults. They need work and programs.
In my novel True Mercy, one of the main characters is Adam Hitchens, a young man with autism who does simple, repetitive clerical tasks at a local business. He has a place to go every day and is proud to hold a job. I recently read the article “500,000 Teens with ASD are Headed to Adulthood. Where will They Work?” By Suzanne Garofalo. It appeared in the Houston Chronicle and was reprinted in the disabilityscoop (https://www.disabilityscoop.com/2018/11/16/500000-teens-asd-work/25736/. The article contains many examples of young adults on the autism spectrum who have been able to find satisfying employment and now feel productive and have a sense of purpose. Many employers are realizing it is well worth their while to train and keep these employees, finding many of them to be dedicated and hardworking. Garofalo writes that “Research shows job activities that encourage independence to reduce symptoms and increase daily living skills.” Some businesses even qualify for a tax write-off for participating in programs to employ these individuals. While this is certainly encouraging and a reason to celebrate, Garofalo also points out that “nearly half of 25-year-olds with the disorder have never held a paying job, according to Autism Speaks.” All people by nature need a schedule, a program with activities, or work in order to thrive. Parents are finding that as their special needs children get older, it becomes harder to find programs and resources. Many programs have waiting lists.
It is my hope that more opportunities for this population increase throughout the country. With the rate of autism now 1 in every 59 births in the United States, “It is a population that’s exploding but finds few opportunities.”
In my novel True Mercy, Bruce often had to worry about his son Adam’s behavior in social settings. But if the story took place in Austin, Minnesota, he would have had much less to worry about. That’s because Austin is an autism-friendly town. Ten years ago, the community used their resources to educate local business owners about autism and train them to be aware of these customers’ needs. The town even has a community autism resource specialist. Therefore, Austin’s residents are probably more aware than most about the signs of autism that my story’s character Adam displayed: intense fixation on specific topics, unusual body movements like hands flapping, echolalia (word repetition), and meltdowns caused by feeling overwhelmed.
So how did the small town of Austin make itself autism-friendly? Just go in the Hormel Historic Home, a nonprofit museum dedicated to all things Spam, the canned meat that has been produced by Hormel Foods there for 81 years. Mary Barinka works there. She once worked as a Hormel marketing executive and is now the town’s autism resource specialist as well as a museum employee. Barinka has a sixteen-year-old daughter with autism. Along with working at the museum, she handles questions and requests from parents that can range from how to give a presentation to new business owners and their employees on becoming autism-friendly, where to find a good speech therapist, and how to help a local community college launch a special autism program.
You may wonder what business owners must do to make their establishments autism-friendly. Often individuals with autism react negatively to overstimulation, so these changes can include dimming the store’s lights, lowering the music volume, and training employees to speak slowly and in short phrases, and to be prepared to have more patience than usual.
The program began when retired Hormel executive and family friend Gary Ray asked Barinka if her then six-year-old daughter was able to participate in summer camp. Barinka told him she and her husband would like her to attend camp but it was not possible because they would need the camp to understand their daughter’s special needs and they would have to hire a helper. Ray and his wife then offered a donation for Barinka to start a camp. She jumped on it. The Ray’s have since donated over $100,000 to fund more programs such as a monthly respite night with children’s activities to give parents and caregivers a break, a peer program at the high school where student volunteers to spend time with another high schooler with autism one-on-one, day camps, and of course, the museum.
Hearing about the town’s programs, new families have moved in. Barinka also gets calls for advice from other towns who would like to set up their own autism-friendly programs.
Perhaps someday I will be able to visit Austin, Minnesota. I am sure my fictional character Adam and real-life individuals with autism would thrive in this town.
Information for this post came from The Washington Post article “The town that gave the world Spam is proud to be ‘autism-friendly’ by Amy Ellis Nutt.
True Mercy can be purchased on Amazon, IngramSpark, and Smashwords.
The Famous Hormel Historic Home