Milestones Magazine was developed to help individuals with disabilities and their families achieve and celebrate events and milestones in their lives.
eyond disabilities
Fall Issue 2019
Off to College
IEP
9-1-1
Having
Our
Baby
Good
Sports
U.S.A.
nside
Parent of Young Children
03 Let’s Take a Walk
05 Toilet Training - Woa Horsie
Preschool / School Age
07 IEP Ins & Outs
10 Good Sports U.S.A.
Teen / Young Adult
11 Gateway to the Work a Day World
13
15
19
22
25
Off to College
Customized Employment: Carving out a Job
The Birth, Care, & Feeding of a Micro-Enterprise
Having our Baby
Guardianship or Power of Attorney: What Gives?
All Ages
14 Man’s (and Woman’s and Child’s) Best Friend
17 9-1-1, What’s Your Emergency?
1FALL 2019
Publisher
Susie Redfern, is the parent of a special
needs child who recently “aged out”
of the public-school system.
She developed Milestones Magazine
to help individuals with disabilities
and their families achieve and celebrate
events and milestones in their lives.
info@milestonesmagazine.com
MilestonesMagazine.net
LET’S
TAKE
a
WALK
For parents, the top
three developmental milestones
in the first years of their
children’s lives are
talking, walking, & toileting
independently.
Parents often worry whether their child is “late”
developmentally and may compare their child to a relative’s
or friend’s child who seemed to walk or talk practically from birth
(at least according to his or her parents). Although much of this
concern may turn out to be unfounded for individual children;
reassurance from doctors and others that a child “will talk/walk
when they are ready” isn’t always good enough either. Parents
usually have a good sense of when there could be a real problem.
There are things parents can do to help their child through the
developmental process that leads to walking (and other gross
motor activities). To outline just a few of these, I am pleased to
refer to a blog by Joanne Pygon, PT, MS, PCS of Easterseals
DuPage & Fox Valley, entitled “How Physical Therapy Supports
Children with Down Syndrome”. Of course, the tips and
techniques mentioned in this article can also help children
with similar physical or coordination issues, whether or not
they have Downs Syndrome.
3
For infants and toddlers, physical therapists concentrate on working with the
parents and child to build a foundation of strength and movement. They may
use special braces for the child’s feet so his/her muscles align right. They will
provide parents and caregivers with daily activities to work on with their child.
They may use compression garments such as a SPIO, Benik or an abdominal
binder to help with the child’s posture and allow him or her to breathe better.
If the child likes water, they may suggest aquatic therapy.
During the preschool years, therapy will build on what was started in
infancy. Group sessions may be scheduled to develop children’s social and
communication skills with peers as well. Physical therapists will check on the
continued need for, and fit of, braces for children who have them. They may
recommend park district programs such as swimming or gymnastics.
During the elementary/high school years, emphasis is on consultation for
kids involved in community-based programs. Physical therapists can help
children learn to ride a bike and/or refer children to “learn to bike” programs
in the community. Rock climbing may be of benefit, and Easterseals (along
with park district and private organizations) offer programs at indoor facilities.
Swimming lessons and group swim times are offered by many park districts
and special recreation associations. For teens, all that may be necessary is
updating home programs to adjust for the effects of growth on a child’s
posture. Also, while a teen may no longer need braces; inserts in shoes
can support their foot position and may be beneficial
For the full blog, please Easter Seals DuPage & Fox Valley.
For more information on Easterseals DuPage & Fox Valley Down Syndrome
Services. To get started or learn more, call 630-282-2022.
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4
Woa,
Horsie
Toilet training is a universal developmental
milestone for young children, including my own
children, of course. Here’s my personal take:
The workshop provided parents to create make
and take systems to use with their children for
toilet training. Many of the attendees had children
who were well beyond preschool age who still had
My older son was “small for his age” when he was
young. Therefore, toileting was a challenge for him
with adult size toilets. We purchased a toilet seat,
with the flap, that is available at most stores, and fits
over the adult sized seat. My son didn’t like using it,
and the very next day came up with his own
solution to the problem. He marched into the
significant toileting challenges. I was highly
motivated for my son not to become one of these
children. My take-a-way from the workshop was the
emphasis the workshop operator, Patti Boheme, put
on the reliance on routine that people with autism
have. That reliance on routine is the primary way
that many people with autism learn.
bathroom, climbed up onto the toilet facing the
back, straddled it, put his hands down in front of
him to anchor himself, and went to the bathroom.
That was the way he used the toilet from that day
until he was tall enough to stand and use the toilet
as most guys do.
Therefore, as soon as the workshop ended, I
started toilet training in earnest with my son. While
I didn’t use most of the “bells and whistles” I had
created, I did introduce my son to the toilet and
had him use it several times daily. Although it took
a year and a half for him to independently use the
My younger son was a “different kettle of fish” in
this area (and others) due to his developmental and
bathroom; when he was ready it all happened in
one day (though accidents did happen routinely
for several more years).
cognitive issues. At the time he was a preschooler
(some 20 years ago), we had an opportunity to
attend a 2-day toilet training workshop that Little
Friends was offering at no charge (and they had
me at free!).
Although Little Friends no longer offers extensive
workshops for parents, they still provide assistance
to parents. I am pleased to introduce Patti Boheme
of Little Friends, who offers advice and resources
5
for parents to toilet train children who have
it is challenging the longer you wait.
challenges.
Most children will become independent in toilet
“Tips for Toilet Training
training but some may need to be taken to the
bathroom on a schedule but wear underwear. Being
Start doing readiness training as young as 18
time trained is still a higher level of independence.
months. Readiness training means you change
the child in the bathroom, have them sit on the
toilet with the lid down clothes on. Eventually after
they are very comfortable you can have them sit on
the toilet without underwear. Use an adaptive seat
where the hole is smaller if the child is small and
could fall in or get off balance.
It helps to chart what your child eats and when they
go to the bathroom every half hour. The chart will
show a pattern of urinating and bowel movements
so you can set a schedule of when to take them to
the bathroom. Then use powerful rewards for when
they are dry and go to the bathroom in the toilet.
Do not wait too long to start toilet training. Once
the child has a strong habit of going in a pull up or
Above all be consistent and stay positive. If your
child has an accident stay calm and neutral.”
diaper it is hard for them to make that switch. The
longer you wait the stronger the habit is to void in
the toilet. Many parents think children are not ready
but waiting past 5 can make it even harder.
For more information Patti Boheme and Mary
Crissman have written a toilet training program that
has a picture story of all the steps of toileting and a
written manual for parents. The Toilet Training Kit
It is never too late to start! We have trained
individuals into their teens and early twenties but
can be purchased from Little Friends Center for
Autism at 630-305-4196. M
6
I.E.P. (which stands for stands for Individualized
Education Program) is likely the most used acronym for
parents of the school-aged special needs population,
as it is the gatekeeper to special education services in
the public-school system; nobody can enter without
one. It is the final step in the process of entering the
special education system. With parental consent,
children in possible need of special education services
are first screened, then fully evaluated. Finally, an IEP
is developed if/when it is determined the child is eligible
for special education.
For every student receiving special education services, the I.E.P.,
is rewritten annually, a full re-evaluation is done every three years,
and it is revised on an as-needed basis (usually at parent’s
request). This document provides the road map for all the
accommodations provided to the child to help him or her succeed
in all aspects of school life and transition successfully to the next
level of education (elementary to middle to high school). Transition
to adulthood services start at age 14. The IEP determines
whether a student officially graduates from high school at the end
of senior year or stays in the school system through “transition”,
which can continue up to the student’s 22nd birthday. It also
determines whether a student receives services during
the summer.
Federal law relative to special education always look for children to
be in the “least restrictive environment” possible, and it spells out,
at a minimum:
7
What setting the child will be placed in
((e.g. special education school, special
minutes) daily, weekly, or monthly to devote
to occupational therapy.
education (self-contained) classroom, or
regular classroom))
Once all the evaluations have been finished,
a date will be set for an IEP conference. A
What services/staff will be provided for
the child (e.g. special ed. teacher,
instructional aides, occupational, physical,
speech therapists, psychologist, social worker,
transportation)
letter will be sent to the parent specifying the
date of and reason for the conference, and
who has been invited (e.g. parent, teacher,
psychologist, speech therapist). The parent is
asked to confirm the meeting date or request
a date change. The parent has the right to
Where the services will be provided
(e.g. classroom, resource room,
therapist’s or counselor’s office)
bring others along with her to the meeting, but
is asked to inform the school about how many
he/she is bringing (generally one or two people
only, for space reasons). Usually, a couple of
What accommodations or adaptations
will be made to the curriculum (e.g.,
more time for child to complete assignments,
weeks or so before the meeting, the parent will
receive a proposed IEP to review and come
prepared to discuss during the meeting.
alternative teaching methods, or assistive
technology)
At a typical IEP meeting (at least every
one I have participated in), each invited
The IEP process starts when a parent requests
testing of their child for possible special needs
that impede his/her learning; or when school
staff recommend a child for testing and the
parent agrees. The classroom teacher and
other school staff, as appropriate, will evaluate
the child and write a report. For example, the
participant goes over his or her report with
the parent. The reports typically specify goals
to be reached and how progress toward
those goals is to be measured. At the end
of the conference, the parent has the
opportunity to agree with the goals as written
or request changes.
occupational therapist will evaluate the child’s
fine motor skills (e.g. use of his/her hands for
writing, drawing, etc.), recommend activities
to address the child’s difficulties in that area,
and suggest the amount of time (number of
Most parents are involved with their children’s
education and want them to be as successful
and happy as possible. Children with special
needs add another wrinkle to the educational
8
process, and disagreements, ranging from
minor to nearly needing to call out the National
Guard, are common. School systems generally
have procedures for parents and staff to follow
when disputes happen or parents don’t feel
that aspects spelled out in the IEP aren’t
being implemented properly (in other words,
can help remind parents about their legal
rights no matter where their children ultimately
end up, whether it’s the public school system,
private school, or home-schooling (and homeschooled
children can remain officially enrolled
in a public school to receive therapy services
and participate in extra-curricular activities).
not meeting their child’s needs). In some
cases, outside experts, in particular “IEP
advocates”, are brought in by the parents.
Finally, it’s important to remember that the
overwhelming majority of parents and school
personnel want children (including those with
IEP advocates are paid or unpaid advisers/
consultants. They can accompany parents
to IEP meetings, review IEP documents,
and guide parents through the dispute
special needs) to succeed and be happy; and
will work (sometimes even together), to the
best of their collective abilities, to help make
that happen.
resolution process. They can help parents
“simmer down”, pick their battles, and fight
those battles effectively and hopefully, with no
collateral damage to their children (or school
personnel, for that matter).
Acknowledgements: Thanks to contributor
Stacie Green, who read the article and offered
her comments. Stacie Green has been at both
ends of the IEP process, as a parent and as a
volunteer IEP advocate. Her email address is
They are there for the parents when there are
staciegrn72@gmail.com and she can be found
disagreements with a school district on where
and how their children are educated so they
on Facebook.
M
can best meet their potential and thrive. They
9
Good
While team sports aren’t everyone’s “cup of tea”,
they do appeal to a large number of people,
especially families with preschool-school aged
children. Park districts, special recreation
association and well-known (or not so well known)
private organizations provide programs for many
sports, including (but not limited to) baseball,
Sports
U.S.A.
football, soccer, tennis, and hockey.
Generally, for parents, when considering a program,
the first thing to determine is whether the child is
interested in the particular sport in question or at
least willing to give it a try. Then factor in whether a
specific program has the right support, atmosphere,
etc. for your specific child. Even within the same
family, it is not usually “one size fits all”.
Special recreation associations and some other
community-based sports programs are exclusively
An extra wrinkle comes into play (apology if this
is a mixed metaphor) when there is a child with
challenges in the family; be they visual or
hearing, physical and/or coordination, language
and/or speech, or cognitive and/or sensory. Those
families often are looking to choose between a
“regular” program that offers supports and
accommodations and a program exclusively for
for children with challenges or have teams or clinics/
classes for them. It would be a mistake, however, for
parents to automatically assume that a specialized
program is right for your child. I have personally
enrolled my son in a couple of special recreation
programs in the past that turned out to be “over his
head” and of little interest/benefit to him. Parents still
need to do their homework about this.
children with their child’s specific challenges.
To wind this up: while I generally avoid advocacy
Park districts generally offer supports and
accommodations. Major sports organizations do as
well (though I can’t, of course, guarantee that). What
may be offered in one location or metro area may not
exist elsewhere. There are also local or “mom and
pop” sports programs that may include children
positions; I will make an exception now. I boldly come
out in favor of respect, support, and civility towards
all players, spectators, coaches, and umpires/referees.
Many of the latter two are volunteers and/or not much
older than the players themselves. I believe that
winning (as in the team that scores the most points)
with challenges.
is not everything; it isn’t even the only thing!
M
10
GATEWAY to the WORK a DAY WORLD
My older son’s first job was at a seasonal pop-up toy
store at a local mall. The store was called “All Wound Up”
(which we privately and not so jokingly referred to as
“All Screwed Up”). His second job was a summer position
as help desk at a computer lab at a local college. His next
gigs were at fast food joints. He eventually ended up
going for a Master’s Degree, and landed a career-track
civilian job at the National Security Agency (NSA) in the
whose mission is to provide job training for people with
disabilities. He has a weekly shift there and I am his
volunteer job coach. Each family pays a monthly fee, of
which roughly half comes back to the worker as minimum
wage for about 10 hours of work per month. State
government assistance to him to help obtain and keep
a job is unavailable, as a vocational evaluation has
deemed him “not work ready”.
Baltimore/Washington D.C. area.
For many teens and college age adults, their first job is a
My younger son’s trajectory was quite different. He has
autism and some cognitive impairment. While in school,
he had a handful of training opportunities, mostly
involving recycling at his school and other district schools
to which he was transported. The vocational coordinator’s
assessment of his abilities was that he can succeed at
a volunteer job with maximum support. His only real
milestone; providing them an income, independence, and
a starting taste of adult life. For many people, there are
sometimes obstacles to getting and/or keeping that job
(or subsequent jobs). However, as my son’s experiences
show, for people with challenges, those difficulties are
often compounded, resulting in an unemployment rate
that can approach 80% (or higher).
work experience is as “team member” at a greenhouse
11
For tips on the job search process for people with
disabilities, I am pleased to introduce Giana Ferrari Ayers
of Ferrari Resource Group.
“Figuring out
what is the
“Figuring out what is the right job for someone with
a disability (or even without one, for that matter) involves
a variety of considerations. Personal interests,
environmental preferences, academic achievement,
aptitudes, temperament, strengths, and limitations all
factor into the decision-making process. It is also
important to consider any reasonable accommodations
right job
for someone
that will be required to perform the job. Examples i
nclude job coaching, modifications to the physical work
environment, and regularly scheduled breaks.
Once possible job areas or types have been identified,
the next step is to locate and apply for jobs. These can
be found through online search engines, job boards, job
with a disability
clubs, job fairs, and networking. I always encourage
my clients to explore their own network of friends,
family, neighbors, teachers, and other connections
to identify new opportunities. Contacting local
INVOLVES
a variety of
businesses (on the phone or in person) can also be a
great way to find jobs that may not be advertised.
Applying and interviewing for a job can be an
overwhelming process. To stay organized, it is helpful
to create a file on the computer to house contact
information, a summary of past employment or volunteer
considerations.”
experience, and reference information. This file can be
accessed for each application which will save time and
frustration. Whenever possible, seek out the assistance
of a vocational rehabilitation counselor to provide
structure and guidance. They can also assist with
interview techniques, disability disclosure (if applicable),
and communicate any accommodations required.”
M
Giana Ferrari Ayers
Ferrari Resource Group, Inc.
28379 Davis Parkway Unit 801 (Clarus Center)
Warrenville, IL 60555
giana@ferrariresourcegroup.com
630-393-0499 (Fax)
gianaferrari.com
12
GOING TO COLLEGE
Going off to college is a milestone for many
high school students, who may start their college prep
as early as their freshman year of high school. They get
on the “college prep” track for their coursework, take
honors or advanced placement (AP) classes, do
extra-curricular activities, and so on, at least in part
to develop a “resume” that will look good to colleges
of their choice.
The college prep process can be similar for students with
learning challenges, but they will typically need supports;
not just for succeeding with their high school classes,
but also in preparing for and succeeding in college.
While supports are typically available during the high
school years, particularly for students receiving special
education services, those supports and services are not
typically “baked into the cake” at the college level.
That being said, all is not lost. Students can audit
classes of interest (no-credit option) and some colleges
and universities have formal programs set up that
provide supports, but treat these students the same as
any other college student. There are also organizations
and businesses that work with students and their
families to meet the challenges involved in preparing
for and succeeding in college.
One such organization is JJB Educational Consulting,
Inc., which serves students with learning differences.
They provide assistance to students with learning
differences and their families. They help high school
students select classes, extra-curricular activities, and
summer options that meet their interests. They discuss
learning support options and assess independent
living skills. They assist in all aspects of the college
testing, application, and selection process. They have
presentations for students and families at local libraries
and other locations.
M
Jordan Burstein
JJB Educational
Consultants Inc.
1441 Hemlock Knoll Terrace
Northbrook, IL 60062
847-940-8090
JJB-edconsultants.com
collegesupports.com
jordan@jjb-edconsultants.com
13
Man’s
&
Woman’s
&
Child’s
Best
Friend
For most families, a dog is just a pet, who provides companionship, learns
tricks that the family teaches him or her, and gets taken for walks daily. It’s
a different slant, however, for individuals with disabilities. For them, a dog
is a trained caregiver that performs needed tasks and/or provides them the
independence to achieve desired milestones in their lives.
A number of organizations, mostly not-for-profit, exist throughout the
United States to train these dogs and provide them to families. One such
group is Canine Companions for Independence, which has a Greater
Chicagoland chapter.
Canine Companions is a 501(c)(3) non-profit organization that provides
highly trained assistance dogs and ongoing support to ensure quality
partnerships. They train dogs to help adults with physical disabilities by
performing daily tasks, alert the deaf and hard of hearing to important
sounds, enhance independence for children and adults with physical,
cognitive and developmental disabilities, and work with professionals
in a visitation, education or healthcare setting.
Canine Companions for Independence can be visited at their website.
The Greater Chicagoland Chapter is a local volunteer group dedicated
to fund raising, spreading awareness and supporting local volunteer puppy
raisers. The chapter can be visited at their Facebook page and emailed.
M
14
Customized employment: carving out a job
Among the terms and acronyms bandied about around
families who have children with disabilities, customized
employment comes to or near the top of the list for some
families as the child becomes a teenager and young adult.
It can be an approach to finding or creating employment
that focuses on folks with disabilities who have difficulties
“A Carve Out is an employment
opportunity; working in the community,
in a position that was created with the
Job Seeker’s strengths in mind.
and challenges beyond the usual scope of the traditional
vocational rehabilitation system. Some of these people may
have a skill or talent, such as counting cards in Las Vegas (and
thus saving their brother’s business) that brings in enough
income that they are considered gainfully employed. Folks in
this category tend to have talent in the creative or performing
arts, or perhaps a focused interest in something that can be
developed into a profitable business.
The customized employment process focuses, first, on
So, who creates these jobs? I do - as a Case Manager/Career
Counselor helping adults with varying disabilities obtain and
maintain employment. I believe information is power; the
intent is to share my approach to creating sustainable and
successful Carve Out job opportunities, with you the reader.
Let’s get started!
When would a Job Seeker benefit from a Carve Out?
Here are a few instances:
discovering the challenged individual’s likes, dislikes, skills,
interests, and so on. Based on where this process leads,
self-employment options may be explored, either along with
or instead of community employment. Businesses that might
When an individual’s maximum work hours per week are less
than 10 hours (based on recommendations of their health
provider to maintain physical and/or emotional stability).
employ the person can be identified and the counselor, in
effect, scouts them. He or she will talk to the owner or
manager, employees, read job descriptions, and so on, to
determine if the business’ operations can be streamlined in
When individuals need long term on-site support (on the job
support/Job Coaching, due to disability and level of support
needed to maintain successful employment).
some ways and a job “carved out” for the individual with a
disability. Basically, the goal is a “win-win” situation for
the business and the individual with a disability.
Successful customized employment outcomes don’t just
come out of thin air or through wishful thinking (much as
When an individual whose work skills and strengths are
specific to one area or task (this Job Seeker would likely be
most successful with an accommodating employer, who can
Carve Out a position, performing a single or minimum
number of tasks).
I’d like to believe otherwise). They depend on the individuals
with disabilities themselves, their families, friends, vocational
skills counselors/professionals, non-profit organizations, and
companies that specialize in the field.
One such professional is Jody Verble, who works as a career
If it has been determined that an individual would be most
successful in a Carve Out position, the first step towards
this goal is to address the Job Seeker’s Stability: Medical,
Psychiatric, Residential and Transportation (for more details,
refer to the 4 Areas of Stability).
counselor helping adults with various disabilities to maintain
community employment. She will elaborate on customized
employment and how individuals, families, advocates, and
caregivers can participate in the process.
Why is this important?
If the Job Seeker is actively suffering from psychiatric and/or
medical condition(s), is ‘in between residences’ or does
15
Job Seekers
not have a reliable way to get to/from work (i.e., is lacking
Interest
stability in one of the 4 Areas); short- or long-term success
of employment (even a Carve Out position) will likely be
negatively affected.
Job Seekers
Likes
The next step is to identify appropriate job matches. I use
a questionnaire, taking a person-centered approach, to
engage the individual and gain feedback on their goals,
interests and needs. Feedback is key. The initially reported
Job Seekers
Dislikes
needs, interests, goals often change throughout the job
search process. Therefore, I request feedback weekly
and adjust the job search focus as needed.
Job Seekers
Skills
As the Case Manager, I always consider the following
information, when seeking a Carve Out on behalf of the
Job Seeker: a job that meets their interests, strengths,
work hours, transportation needs, work environment, work
restrictions reported, and all other needs/preferences reported.
I work with the individual’s strengths and work around
potential barriers. By anticipating the Job Seeker’s individual
barriers to employment, and reduce/eliminate those barriers
with a plan, employment goals can be realized with more
success and less frustration. This is where Preparation
Meets Opportunity.
How do I go about finding a Carve Out job?
I have found that privately owned companies, not national/
chain companies (for example), are excellent places to seek
A Carve Out position is beyond a reasonable
accommodation(s); it’s a request of an employer to create a
position that otherwise did not exist. Once the Carve Out is
secured, on the job support/Job Coaching may be of benefit
to the New Employee: learning their new job task(s) and
company policies, developing natural supports, communicating
with co-workers and management, and the numerous
other details associated with starting a new job - all in an effort
to support the goal of successful community employment.
Carve Out opportunities. With privately owned companies the
owners and/or decision makers are more accessible to discuss
their company’s needs, which then allows me to speak with
the decision maker about possible Carve Out opportunities
and the value the Job Seeker/candidate would bring to the
team if he or she is given the chance.
Why not national/chain companies?
My experience has been that ‘chains’ are duplicated systems,
The result:
Carve Outs create employment opportunity for those
individuals who require more support. Coupled with an
appropriate job match, working in the community also:
promotes independence, builds self-confidence, boosts
self-esteem, not to mention - the increased pride and dignity
that results from a hard day’s work and the purchasing power
of the paycheck that follows - priceless.”
often with corporately driven budgets that support those
(duplicated and proven) systems, which limits that company’s
local location’s management from making Carve Out
opportunity decisions. Example: during a recent conversation
with a Store Manager, of a national chain retail location,
I asked if she had ‘stock only’ job opportunities - as the Sales
Editor’s Note: The process of customized employment works
differently for each individual because each person brings
their individual strengths, interests, and abilities to the process.
Therefore, this article, by necessity, is rather general. For more
specific advice, please contact Jody directly.
Associate job description for her location included ‘cross
training’ and register work. The response received
included the Store Manager’s frustration that all hires are
required to perform register duties, due to the companies
Contributor Jody Verble, a suburban Chicago resident,
maintains a blog, Disability Peer Advocates, which offers
tips to job seekers. She can be reached by email.
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limited monthly payroll budget.
16
What’s Your
Emergency?
Children (and adults) with developmental disabilities are
not a different species from the rest of us. They act up or
act out for the same reasons that we all do. Their
behaviors often fall into the good (or at least tolerable),
annoying, or potentially expensive (hello, clogged toilet!)
categories, but don’t make them a true danger to
themselves or others.
That is not always the case, however. Circumstances at
home or school may deteriorate and suddenly an
individual is acting out in ways or to a degree that is
unprecedented for him or her. That individual now
poses a threat to his/her safety and the safety of anyone
in range. So, what’s a parent to do? Calling the police
is a frequent response.
As police officers are likely to come into contact with individuals
in crisis, whether in public or through a
domestic disturbance call to 9-1-1, police departments
throughout the United States are responding to these
situations. Their priority is to keep everyone involved in
a particular situation safe, including responders, the
individual, his/her family, and members of the public.
In Aurora IL, where I live, the police department has
instituted a community policing program called “Crisis
Intervention Team”. The information included here about
it comes from a handout I obtained from police officer
Douglas Rashkow at a recent resource fair hosted by
the Indian Prairie District 204 Special Needs PTA.
“The Aurora Crisis Intervention Team (CIT) program
consists of officers specially trained to respond to those
in crisis or with mental health emergencies, including
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people having suicidal or homicidal
ideation, psychosis, or in a mental health,
developmental disability, or brain disease
(dementia) related emergency), to help them
safely through the crisis and direct them to
appropriate resources. The CIT program also
is called upon for domestic disturbance or
quasi-criminal related issues or crisis.
Our CIT partner with local service providers
and definitive care systems, State, Federal,
local and privately funded, to make the best
referrals and deferrals for continuing care. Our
CIT respond during crisis, but also meet with
families who have, or are expected to have
crisis, to avoid critical incidents, and after
crisis to ensure continuing safety and build
relationships.
The Crisis Intervention Team Program also
works hand in hand with the Elder Service
More Information or Enroll in S.N.A.P.P.:
Aurora Police Department
1200 E. Indian Trail, Aurora IL 60506
630-256-5000
You will complete a S.N.A.P.P. Release Form
Officer Program, focusing on senior safety
issues and the Special Needs Aurora Police
Program (S.N.A.P.P.), for wrap around services
for those with disabilities including, but not
limited to, mental illness, dementia, or
developmental disabilities”.
M
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The
Entrepreneurship (as in owning/operating a
business) is a milestone/goal to which some
aspire, and one to which some people with
disabilities regard as preferable. Its potential
Birth
for income coming from something you like
to do and are good at without having to be
hired and fit into an established workplace
can be attractive.
Care
As the parent of a child with a disability, this
option, suggested for my son from school
district transition personnel, basically
amounts to “go forth and micro-enterprise”.
Feeding
Though I know it’s probably grammatically
(though perhaps not politically) incorrect to
use micro-enterprise as a verb, this may not
be such bad advice, especially for the more
and
entrepreneurially minded among us.
However, the advice did not come with
any practical suggestions for starting a
Maintenance
micro-enterprise and making it into a
of
a
profitable, enjoyable, and fulfilling venture
for all involved. So, like the Little Red Hen,
I will do that myself (but don’t expect a loaf
of bread at the end of this article!).
The conception and birth of a micro-enterprise
can start with four one-word questions:
who, what, where, and how (not necessarily
in that order).
Micro-enterprise
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What?
What do I plan to do or make, produce,
distribute, and sell?
Some people base a business on a talent or skill for
which they have an interest, maybe even a passion,
such as painting. Others design or invent a product
that solves a problem affecting them or a family member;
such as an easy-fastening mechanism for people who
have arthritis. Still others base a business on a service
that businesses and individuals need: lawns have to be
cut, papers shredded, attics cleaned, and so on. And
some people and businesses don’t have the time, ability,
or desire to do these things themselves, so they’re willing
to “outsource” them (which is where you come in).
Who?
To whom do you plan to sell your product/service.
Some, by their very nature, are local, so potential
customers or clients are folks in your neck of the woods.
Lawns cannot be exported to China. Others, with the help
of computers and the internet, can be regional, national,
or even global in scope.
Where?
Where will the product be displayed or sold?
Artistic work typically shows up at art galleries, “flea
market” type events and websites such as Etsy. Writers
can blog. Clothing products can be sold at retail stores
(usually distributed through a wholesaler).
How?
How will the product be displayed or sold?
This question is similar to the where question, and
can often produce the same answer.
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As you may have realized by now, answers to
these 4 questions often overlap, and collectively can
provide the underpinnings of a business plan. A
business plan, whether informal or professionally
done, helps you focus on the essentials of your
business. It is required if you will approach a
traditional loan source, such as a bank, for financing.
And it may be necessary for types of creative
financing, such as venture capital, whether from
an established fund or through crowd-funding.
The following resources are both based in the
Chicago area. Life’s Plan Inc. Pooled Trust Services
can help with financing for individuals who meet their
criteria. Perk Center Café can serve as an example
or inspiration for folks looking to start their own
micro-enterprise.
Life’s Plan Inc. Pooled Trust Services - website
Life’s Plan Inc. Pooled Trust Services periodically
offers Micro-industry grants of up to $2,000 for adults
with disabilities or mental illness who meet Social
Security’s disability eligibility criteria under the
Supplemental Security Income. This is a one-time
award for individuals or partnerships (less than 4
people). Details about proposal requirements can be
found at Life’s Plan’s website and questions/inquiries
can be emailed to Scott Nixon.
Local (Chicago Area) Micro-Enterprise
The Perk Center Cafe is a not-for-profit business
enterprise created through Great Potentials, Inc.
and by four parents and one sibling of an
individual with intellectual/developmental disabilities.
It is a collaboration with the Glenview Park District,
who donates the space for the Cafe. The Perk Center
Cafe’s goals are four-fold: to provide employment,
volunteer, and vocational training opportunities to
individuals with developmental disabilities; to offer
good quality food to customers; to build positive
relationships in the community; and to serve as
model to others who might wish to create
businesses for the purpose of employment of
people with disabilities. Feel free to visit the website.
Contact Gail Metrick by email. M
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Having our Baby!
The road to parenthood, symbolically speaking, defies basic
arithmetic as the only time one plus one equals three. It is considered
one of the major milestones of any given person’s adult life. While not
all people choose to have children; and some have medical issues that
make having a biological child risky or impossible; most everyone
intent on having and/or raising a child finds a way to do so. And,
generally speaking, that process moves forward for individuals and
couples without interference from outsiders, other than those involved
in the process of adoption.
That is not always the case for adults with disabilities. Issues for them
range from having to adapt how they provide care for their child due to
the disability to dealing with child welfare authorities concerned that the
disability affects their fitness as parents. The first issue is easier to find
solutions for; parents can get very creative about this. My mother-in-law
told my husband a story about a woman she knew with no arms who
gave her baby baths using her feet.
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For a firsthand account of parenting when you have disabilities; I am pleased
to introduce Ashley Taylor and her husband, with some tips from their blog on
caring for a child when you have a disability. Depending on your disability,
some tips may be more applicable to your situation than others. Some of the
advice, such as child-proofing, also applies to families where the parents don’t
have a disability.
So, without further ado, I present the following tips, excerpted from Ashley’s
article “Disabled parents can prep home and life for their new arrival”.
“Replace stairs with a ramp. Navigating stairs while carrying a baby can pose
a risk of tripping. Steps-free entrances and pathways are especially important
for individuals with mobility disability as they make it easy maneuver within
the home to effectively cater to the baby’s needs.
Expand your corridors and doorways. Wide doorways offer enough clearance
for people using wheelchairs and walkers to safely get through entrances.
Install non-skid flooring. Skid-resistant flooring is vital for both parents with
disabilities as well as their developing children. As your child learns to crawl
and walk, they will need a safe space to practice on. Consider installing vinyl,
linoleum or heavy-duty plastic mats. If you decide to carpet, ensure that the
carpet is fastened on the floor and it has an even texture.
Child-proof your home. For instance, install smoke detectors, carbon
monoxide detectors, corner guards on the sharp corner guards of the furniture,
install outlet covers and keep away hazardous items out of your child’s reach.
Depending on your type of disability, you will need specialized baby care
products and equipment. For instance, if you are a parent with a mobility
disability, the regular baby carrier may not work well for you. If you are using
a wheelchair, you may use a lap baby to hold your infant in front of you.
Similarly, a parent with a hearing disability may need to invest in a babble
band in place of a baby monitor. There are great baby care products for parents
with disabilities. There are also numerous resources both online and offline
that you can leverage for support in your parenting with disability journey.
These include both governmental and non-governmental agencies, websites
and community-based support groups.
While being a parent with disabilities presents unique challenges, with the
right information, resources, planning and preparation, it can be a journey
full of joy and satisfaction. Take time to prepare your home, get baby care
products that are appropriate for your type of disability and identify support
systems and resources. Most importantly, take care of yourself so you can
be able to take care of your child.”
Ashley Taylor and her husband both have disabilities. Ashley blogs, which
provides advice and resources for parents with disabilities. She can be reached
through a contact form at the blog or by email.
M
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Guardianship or
Power of Attorney:
What Gives?
There is much confusion and controversy among parents
of young adults with disabilities, particularly those with
intellectual impairments, on how best to protect their physical
and financial well-being; both when the parent(s) are alive and
after they are gone. Some of these parents may also be children
of elderly parents with physical or cognitive issues of their own.
Guardianship
• A judicial decision made when an individual has not
designated a POA.
• It is a request by someone other than the individual it is for.
• Can be of the Person or of the Estate.
• Can be Temporary, Limited or Plenary.
• Is only revocable when an individual can produce proof that
I have experienced those issues personally, and have gone
the route of full guardianship for our son. However, we have
an uncomplicated set of circumstances in which nobody
contested the guardianship and there’s no money (assets)
involved. For many families, this matter is anything but
they have regained capacity.
• The Mental Health Directive is included in the Guardianship.
• It is a judicial order.
• Judicial oversight and guidelines for Guardianship.
• Expensive.
“cut and dry”.
It is always better to be proactive than reactive. Planning for
I am pleased to introduce the organization “Living Life with
Dignity” and present portions of their article, posted online on
December 7, 2017, to address the difference between Power of
Attorney (POA) and Guardianship, and outline the types, and
pros/cons of each.
your future needs can keep you independent longer and be more
cost effective. If you put a Power of Attorney in place with
someone you trust and you provide them with a detailed account
of what you want (or don’t want), you are more likely to be
cared for the way that you want and your money will go further.
“Power of Attorney (POA)
• A proactive decision made by an individual when they
are of sound mind.
• A designation of someone known and trusted to carry
directives.
• Can be for Healthcare or of the Property.
• Two types of POA: one that is effective immediately and
the other that requires proof of capacity.
• A Power of Attorney for healthcare can be revoked at any time.
• A Mental Health Directive is separate from the Power of
Attorney and is needed in cases where the health issue is
behavioral vs. clinical (IE: Bi-polar disorder).
If you don’t have a Power of Attorney or a Mental Health
Directive and you become incapacitated then anyone who has
a vested interest in your welfare, whether family or friend, can
petition the court for Guardianship. This gives you less choice
of care givers and puts you at higher risk of not having your
choices honored, potentially jeopardizing your independence
and financial well-being. In many cases, when someone
gets Guardianship, the wishes of the individual cannot be
determined, and the ward is subject to what the guardian feels
is in the individual’s best interest. Guardianship proceedings
in themselves can be very costly. A contested Guardianship is
even more costly.
• Is not a judicial order.
• No oversight for a Power of Attorney.
• Cost effective.
When referring to Power of Attorney for the Person or of
the Property vs the different types of Guardianship, you are
basically referring to managing an individual personally and
financially. So, let’s look at the differences:
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Difference between Power of Attorney for Healthcare and
Plenary, Limited & Temporary Guardianship
In a POA for Healthcare your designee can make any decision for you without
a court order. Once an individual has been declared by a physician to lack
competency you simply have to present your Power of Attorney paperwork.
However, with a Guardianship you have to follow the court order. Both types of
Guardianship give certain or all power to act on the individual’s behalf; however,
anything outside of the court order has to be approved by the court. For instance: if
someone has a stroke, becomes dependent on life support and it is not in the court
order, it is always a best practice to go to court to make the decision whether to end
life or not. This protects the Guardian as well as the Ward. In addition, the Guardian
of the Person has to file an annual report with the court as a status update affirming
continuation of the Guardianship.
Difference between Power of Attorney for Property
and Guardian of the Estate
It is a known fact that our ability to reason becomes compromised as we get older.
In fact, studies suggest in some people it can be as early as 65. Having someone
you trust to manage your financial affairs can prevent you from being exploited,
provided the person you choose is of sound integrity. Sadly, I have seen many cases
where individuals have been exploited by the Power of Attorney. Transparency and
proper accounting are two ways a POA can avoid these issues. I recommend when
choosing the POA for property, to pick someone that is good with their own finances
if you want to ensure the safety of your financial future. See This Job Sucks!
Choosing the right Power of Attorney is imperative.
A Guardian of the Estate has little room to exploit anyone
They have to account for every penny that is spent of your money. The court
requires the Guardian of the Estate to produce a yearly report and to provide the
court with an annual budget. The court will readily pick a family member or close
friend over a Corporate or Public Guardian. It is standard practice for family
members to contribute to the welfare of their loved one, while a Corporate Guardian
or the Public Guardian charge for their services. For this reason, when the court
determines someone is not of sound mind, the court will default for family or a
loved one to be the Guardian if appropriate.
Mental Health Directive
The state of Illinois requires a Mental Health Directive in addition to a Power of
Attorney for Healthcare for treatment of a Mental Health Disorder. I won’t go into
the why’s or the politics around it, that is fodder for another blog (next month).
Nonetheless, please note that if you are preparing your estate, this should be a
consideration when putting your directives in order, regardless of whether you suffer
from a mental illness or not. See What is a Health Directive for Dementia?
Your Power of Attorney should know where you keep all of your important
documents, and above all, be transparent. This way, if ever anyone wanted to
challenge your POA’s intentions or abilities, you have everything documented.
NOTE: POAs for Healthcare can easily be revoked, however, Power of Attorney
for Property cannot.
Guardians are mandated to do all of the things a Power of Attorney does and are
appointed by and accountable to the court. A physician’s report as to whether or not
the individual is capable of making their own decisions is a requirement of a petition
for Guardianship but ultimately the court, not the medical professional, makes the
determination and the designation.” M
Living Life with Dignity
333 N. Randall Rd., Ste. 106
St. Charles, IL 60174
630-549-0654
www.lifewithdignity.net
info@lifewithdignity.net
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Connections child care
Child Care Connections links families to child
care suited to children with challenges.
Child Care Connections also provides informational
articles (referencing North Carolina University
Extension Service) about adapting child care
Features a registry that both parents and
providers can sign-up for when they are looking
for, or offering, care for children with various
challenges, such as developmental disability,
programs to children with special needs. Once
you sign-up you’ll receive the article Adapting
the Child Care Environment for Children with
Special Needs.
autism, hearing impairment, vision impairment,
and more!
Check out our website: milestonesmagazine.net
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