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Milestones Magazine Fall Issue

Milestones Magazine was developed to help individuals with disabilities and their families achieve and celebrate events and milestones in their lives.

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eyond disabilities<br />

<strong>Fall</strong> <strong>Issue</strong> 2019<br />

Off to College<br />

IEP<br />

9-1-1<br />

Having<br />

Our<br />

Baby<br />

Good<br />

Sports<br />

U.S.A.


nside<br />

Parent of Young Children<br />

03 Let’s Take a Walk<br />

05 Toilet Training - Woa Horsie<br />

Preschool / School Age<br />

07 IEP Ins & Outs<br />

10 Good Sports U.S.A.<br />

Teen / Young Adult<br />

11 Gateway to the Work a Day World<br />

13<br />

15<br />

19<br />

22<br />

25<br />

Off to College<br />

Customized Employment: Carving out a Job<br />

The Birth, Care, & Feeding of a Micro-Enterprise<br />

Having our Baby<br />

Guardianship or Power of Attorney: What Gives?<br />

All Ages<br />

14 Man’s (and Woman’s and Child’s) Best Friend<br />

17 9-1-1, What’s Your Emergency?<br />

1FALL 2019


Publisher<br />

Susie Redfern, is the parent of a special<br />

needs child who recently “aged out”<br />

of the public-school system.<br />

She developed <strong>Milestones</strong> <strong>Magazine</strong><br />

to help individuals with disabilities<br />

and their families achieve and celebrate<br />

events and milestones in their lives.<br />

info@milestonesmagazine.com<br />

<strong>Milestones</strong><strong>Magazine</strong>.net


LET’S<br />

TAKE<br />

a<br />

WALK<br />

For parents, the top<br />

three developmental milestones<br />

in the first years of their<br />

children’s lives are<br />

talking, walking, & toileting<br />

independently.<br />

Parents often worry whether their child is “late”<br />

developmentally and may compare their child to a relative’s<br />

or friend’s child who seemed to walk or talk practically from birth<br />

(at least according to his or her parents). Although much of this<br />

concern may turn out to be unfounded for individual children;<br />

reassurance from doctors and others that a child “will talk/walk<br />

when they are ready” isn’t always good enough either. Parents<br />

usually have a good sense of when there could be a real problem.<br />

There are things parents can do to help their child through the<br />

developmental process that leads to walking (and other gross<br />

motor activities). To outline just a few of these, I am pleased to<br />

refer to a blog by Joanne Pygon, PT, MS, PCS of Easterseals<br />

DuPage & Fox Valley, entitled “How Physical Therapy Supports<br />

Children with Down Syndrome”. Of course, the tips and<br />

techniques mentioned in this article can also help children<br />

with similar physical or coordination issues, whether or not<br />

they have Downs Syndrome.<br />

3


For infants and toddlers, physical therapists concentrate on working with the<br />

parents and child to build a foundation of strength and movement. They may<br />

use special braces for the child’s feet so his/her muscles align right. They will<br />

provide parents and caregivers with daily activities to work on with their child.<br />

They may use compression garments such as a SPIO, Benik or an abdominal<br />

binder to help with the child’s posture and allow him or her to breathe better.<br />

If the child likes water, they may suggest aquatic therapy.<br />

During the preschool years, therapy will build on what was started in<br />

infancy. Group sessions may be scheduled to develop children’s social and<br />

communication skills with peers as well. Physical therapists will check on the<br />

continued need for, and fit of, braces for children who have them. They may<br />

recommend park district programs such as swimming or gymnastics.<br />

During the elementary/high school years, emphasis is on consultation for<br />

kids involved in community-based programs. Physical therapists can help<br />

children learn to ride a bike and/or refer children to “learn to bike” programs<br />

in the community. Rock climbing may be of benefit, and Easterseals (along<br />

with park district and private organizations) offer programs at indoor facilities.<br />

Swimming lessons and group swim times are offered by many park districts<br />

and special recreation associations. For teens, all that may be necessary is<br />

updating home programs to adjust for the effects of growth on a child’s<br />

posture. Also, while a teen may no longer need braces; inserts in shoes<br />

can support their foot position and may be beneficial<br />

For the full blog, please Easter Seals DuPage & Fox Valley.<br />

For more information on Easterseals DuPage & Fox Valley Down Syndrome<br />

Services. To get started or learn more, call 630-282-2022.<br />

M<br />

4


Woa,<br />

Horsie<br />

Toilet training is a universal developmental<br />

milestone for young children, including my own<br />

children, of course. Here’s my personal take:<br />

The workshop provided parents to create make<br />

and take systems to use with their children for<br />

toilet training. Many of the attendees had children<br />

who were well beyond preschool age who still had<br />

My older son was “small for his age” when he was<br />

young. Therefore, toileting was a challenge for him<br />

with adult size toilets. We purchased a toilet seat,<br />

with the flap, that is available at most stores, and fits<br />

over the adult sized seat. My son didn’t like using it,<br />

and the very next day came up with his own<br />

solution to the problem. He marched into the<br />

significant toileting challenges. I was highly<br />

motivated for my son not to become one of these<br />

children. My take-a-way from the workshop was the<br />

emphasis the workshop operator, Patti Boheme, put<br />

on the reliance on routine that people with autism<br />

have. That reliance on routine is the primary way<br />

that many people with autism learn.<br />

bathroom, climbed up onto the toilet facing the<br />

back, straddled it, put his hands down in front of<br />

him to anchor himself, and went to the bathroom.<br />

That was the way he used the toilet from that day<br />

until he was tall enough to stand and use the toilet<br />

as most guys do.<br />

Therefore, as soon as the workshop ended, I<br />

started toilet training in earnest with my son. While<br />

I didn’t use most of the “bells and whistles” I had<br />

created, I did introduce my son to the toilet and<br />

had him use it several times daily. Although it took<br />

a year and a half for him to independently use the<br />

My younger son was a “different kettle of fish” in<br />

this area (and others) due to his developmental and<br />

bathroom; when he was ready it all happened in<br />

one day (though accidents did happen routinely<br />

for several more years).<br />

cognitive issues. At the time he was a preschooler<br />

(some 20 years ago), we had an opportunity to<br />

attend a 2-day toilet training workshop that Little<br />

Friends was offering at no charge (and they had<br />

me at free!).<br />

Although Little Friends no longer offers extensive<br />

workshops for parents, they still provide assistance<br />

to parents. I am pleased to introduce Patti Boheme<br />

of Little Friends, who offers advice and resources<br />

5


for parents to toilet train children who have<br />

it is challenging the longer you wait.<br />

challenges.<br />

Most children will become independent in toilet<br />

“Tips for Toilet Training<br />

training but some may need to be taken to the<br />

bathroom on a schedule but wear underwear. Being<br />

Start doing readiness training as young as 18<br />

time trained is still a higher level of independence.<br />

months. Readiness training means you change<br />

the child in the bathroom, have them sit on the<br />

toilet with the lid down clothes on. Eventually after<br />

they are very comfortable you can have them sit on<br />

the toilet without underwear. Use an adaptive seat<br />

where the hole is smaller if the child is small and<br />

could fall in or get off balance.<br />

It helps to chart what your child eats and when they<br />

go to the bathroom every half hour. The chart will<br />

show a pattern of urinating and bowel movements<br />

so you can set a schedule of when to take them to<br />

the bathroom. Then use powerful rewards for when<br />

they are dry and go to the bathroom in the toilet.<br />

Do not wait too long to start toilet training. Once<br />

the child has a strong habit of going in a pull up or<br />

Above all be consistent and stay positive. If your<br />

child has an accident stay calm and neutral.”<br />

diaper it is hard for them to make that switch. The<br />

longer you wait the stronger the habit is to void in<br />

the toilet. Many parents think children are not ready<br />

but waiting past 5 can make it even harder.<br />

For more information Patti Boheme and Mary<br />

Crissman have written a toilet training program that<br />

has a picture story of all the steps of toileting and a<br />

written manual for parents. The Toilet Training Kit<br />

It is never too late to start! We have trained<br />

individuals into their teens and early twenties but<br />

can be purchased from Little Friends Center for<br />

Autism at 630-305-4196. M<br />

6


I.E.P. (which stands for stands for Individualized<br />

Education Program) is likely the most used acronym for<br />

parents of the school-aged special needs population,<br />

as it is the gatekeeper to special education services in<br />

the public-school system; nobody can enter without<br />

one. It is the final step in the process of entering the<br />

special education system. With parental consent,<br />

children in possible need of special education services<br />

are first screened, then fully evaluated. Finally, an IEP<br />

is developed if/when it is determined the child is eligible<br />

for special education.<br />

For every student receiving special education services, the I.E.P.,<br />

is rewritten annually, a full re-evaluation is done every three years,<br />

and it is revised on an as-needed basis (usually at parent’s<br />

request). This document provides the road map for all the<br />

accommodations provided to the child to help him or her succeed<br />

in all aspects of school life and transition successfully to the next<br />

level of education (elementary to middle to high school). Transition<br />

to adulthood services start at age 14. The IEP determines<br />

whether a student officially graduates from high school at the end<br />

of senior year or stays in the school system through “transition”,<br />

which can continue up to the student’s 22nd birthday. It also<br />

determines whether a student receives services during<br />

the summer.<br />

Federal law relative to special education always look for children to<br />

be in the “least restrictive environment” possible, and it spells out,<br />

at a minimum:<br />

7


What setting the child will be placed in<br />

((e.g. special education school, special<br />

minutes) daily, weekly, or monthly to devote<br />

to occupational therapy.<br />

education (self-contained) classroom, or<br />

regular classroom))<br />

Once all the evaluations have been finished,<br />

a date will be set for an IEP conference. A<br />

What services/staff will be provided for<br />

the child (e.g. special ed. teacher,<br />

instructional aides, occupational, physical,<br />

speech therapists, psychologist, social worker,<br />

transportation)<br />

letter will be sent to the parent specifying the<br />

date of and reason for the conference, and<br />

who has been invited (e.g. parent, teacher,<br />

psychologist, speech therapist). The parent is<br />

asked to confirm the meeting date or request<br />

a date change. The parent has the right to<br />

Where the services will be provided<br />

(e.g. classroom, resource room,<br />

therapist’s or counselor’s office)<br />

bring others along with her to the meeting, but<br />

is asked to inform the school about how many<br />

he/she is bringing (generally one or two people<br />

only, for space reasons). Usually, a couple of<br />

What accommodations or adaptations<br />

will be made to the curriculum (e.g.,<br />

more time for child to complete assignments,<br />

weeks or so before the meeting, the parent will<br />

receive a proposed IEP to review and come<br />

prepared to discuss during the meeting.<br />

alternative teaching methods, or assistive<br />

technology)<br />

At a typical IEP meeting (at least every<br />

one I have participated in), each invited<br />

The IEP process starts when a parent requests<br />

testing of their child for possible special needs<br />

that impede his/her learning; or when school<br />

staff recommend a child for testing and the<br />

parent agrees. The classroom teacher and<br />

other school staff, as appropriate, will evaluate<br />

the child and write a report. For example, the<br />

participant goes over his or her report with<br />

the parent. The reports typically specify goals<br />

to be reached and how progress toward<br />

those goals is to be measured. At the end<br />

of the conference, the parent has the<br />

opportunity to agree with the goals as written<br />

or request changes.<br />

occupational therapist will evaluate the child’s<br />

fine motor skills (e.g. use of his/her hands for<br />

writing, drawing, etc.), recommend activities<br />

to address the child’s difficulties in that area,<br />

and suggest the amount of time (number of<br />

Most parents are involved with their children’s<br />

education and want them to be as successful<br />

and happy as possible. Children with special<br />

needs add another wrinkle to the educational<br />

8


process, and disagreements, ranging from<br />

minor to nearly needing to call out the National<br />

Guard, are common. School systems generally<br />

have procedures for parents and staff to follow<br />

when disputes happen or parents don’t feel<br />

that aspects spelled out in the IEP aren’t<br />

being implemented properly (in other words,<br />

can help remind parents about their legal<br />

rights no matter where their children ultimately<br />

end up, whether it’s the public school system,<br />

private school, or home-schooling (and homeschooled<br />

children can remain officially enrolled<br />

in a public school to receive therapy services<br />

and participate in extra-curricular activities).<br />

not meeting their child’s needs). In some<br />

cases, outside experts, in particular “IEP<br />

advocates”, are brought in by the parents.<br />

Finally, it’s important to remember that the<br />

overwhelming majority of parents and school<br />

personnel want children (including those with<br />

IEP advocates are paid or unpaid advisers/<br />

consultants. They can accompany parents<br />

to IEP meetings, review IEP documents,<br />

and guide parents through the dispute<br />

special needs) to succeed and be happy; and<br />

will work (sometimes even together), to the<br />

best of their collective abilities, to help make<br />

that happen.<br />

resolution process. They can help parents<br />

“simmer down”, pick their battles, and fight<br />

those battles effectively and hopefully, with no<br />

collateral damage to their children (or school<br />

personnel, for that matter).<br />

Acknowledgements: Thanks to contributor<br />

Stacie Green, who read the article and offered<br />

her comments. Stacie Green has been at both<br />

ends of the IEP process, as a parent and as a<br />

volunteer IEP advocate. Her email address is<br />

They are there for the parents when there are<br />

staciegrn72@gmail.com and she can be found<br />

disagreements with a school district on where<br />

and how their children are educated so they<br />

on Facebook.<br />

M<br />

can best meet their potential and thrive. They<br />

9


Good<br />

While team sports aren’t everyone’s “cup of tea”,<br />

they do appeal to a large number of people,<br />

especially families with preschool-school aged<br />

children. Park districts, special recreation<br />

association and well-known (or not so well known)<br />

private organizations provide programs for many<br />

sports, including (but not limited to) baseball,<br />

Sports<br />

U.S.A.<br />

football, soccer, tennis, and hockey.<br />

Generally, for parents, when considering a program,<br />

the first thing to determine is whether the child is<br />

interested in the particular sport in question or at<br />

least willing to give it a try. Then factor in whether a<br />

specific program has the right support, atmosphere,<br />

etc. for your specific child. Even within the same<br />

family, it is not usually “one size fits all”.<br />

Special recreation associations and some other<br />

community-based sports programs are exclusively<br />

An extra wrinkle comes into play (apology if this<br />

is a mixed metaphor) when there is a child with<br />

challenges in the family; be they visual or<br />

hearing, physical and/or coordination, language<br />

and/or speech, or cognitive and/or sensory. Those<br />

families often are looking to choose between a<br />

“regular” program that offers supports and<br />

accommodations and a program exclusively for<br />

for children with challenges or have teams or clinics/<br />

classes for them. It would be a mistake, however, for<br />

parents to automatically assume that a specialized<br />

program is right for your child. I have personally<br />

enrolled my son in a couple of special recreation<br />

programs in the past that turned out to be “over his<br />

head” and of little interest/benefit to him. Parents still<br />

need to do their homework about this.<br />

children with their child’s specific challenges.<br />

To wind this up: while I generally avoid advocacy<br />

Park districts generally offer supports and<br />

accommodations. Major sports organizations do as<br />

well (though I can’t, of course, guarantee that). What<br />

may be offered in one location or metro area may not<br />

exist elsewhere. There are also local or “mom and<br />

pop” sports programs that may include children<br />

positions; I will make an exception now. I boldly come<br />

out in favor of respect, support, and civility towards<br />

all players, spectators, coaches, and umpires/referees.<br />

Many of the latter two are volunteers and/or not much<br />

older than the players themselves. I believe that<br />

winning (as in the team that scores the most points)<br />

with challenges.<br />

is not everything; it isn’t even the only thing!<br />

M<br />

10


GATEWAY to the WORK a DAY WORLD<br />

My older son’s first job was at a seasonal pop-up toy<br />

store at a local mall. The store was called “All Wound Up”<br />

(which we privately and not so jokingly referred to as<br />

“All Screwed Up”). His second job was a summer position<br />

as help desk at a computer lab at a local college. His next<br />

gigs were at fast food joints. He eventually ended up<br />

going for a Master’s Degree, and landed a career-track<br />

civilian job at the National Security Agency (NSA) in the<br />

whose mission is to provide job training for people with<br />

disabilities. He has a weekly shift there and I am his<br />

volunteer job coach. Each family pays a monthly fee, of<br />

which roughly half comes back to the worker as minimum<br />

wage for about 10 hours of work per month. State<br />

government assistance to him to help obtain and keep<br />

a job is unavailable, as a vocational evaluation has<br />

deemed him “not work ready”.<br />

Baltimore/Washington D.C. area.<br />

For many teens and college age adults, their first job is a<br />

My younger son’s trajectory was quite different. He has<br />

autism and some cognitive impairment. While in school,<br />

he had a handful of training opportunities, mostly<br />

involving recycling at his school and other district schools<br />

to which he was transported. The vocational coordinator’s<br />

assessment of his abilities was that he can succeed at<br />

a volunteer job with maximum support. His only real<br />

milestone; providing them an income, independence, and<br />

a starting taste of adult life. For many people, there are<br />

sometimes obstacles to getting and/or keeping that job<br />

(or subsequent jobs). However, as my son’s experiences<br />

show, for people with challenges, those difficulties are<br />

often compounded, resulting in an unemployment rate<br />

that can approach 80% (or higher).<br />

work experience is as “team member” at a greenhouse<br />

11


For tips on the job search process for people with<br />

disabilities, I am pleased to introduce Giana Ferrari Ayers<br />

of Ferrari Resource Group.<br />

“Figuring out<br />

what is the<br />

“Figuring out what is the right job for someone with<br />

a disability (or even without one, for that matter) involves<br />

a variety of considerations. Personal interests,<br />

environmental preferences, academic achievement,<br />

aptitudes, temperament, strengths, and limitations all<br />

factor into the decision-making process. It is also<br />

important to consider any reasonable accommodations<br />

right job<br />

for someone<br />

that will be required to perform the job. Examples i<br />

nclude job coaching, modifications to the physical work<br />

environment, and regularly scheduled breaks.<br />

Once possible job areas or types have been identified,<br />

the next step is to locate and apply for jobs. These can<br />

be found through online search engines, job boards, job<br />

with a disability<br />

clubs, job fairs, and networking. I always encourage<br />

my clients to explore their own network of friends,<br />

family, neighbors, teachers, and other connections<br />

to identify new opportunities. Contacting local<br />

INVOLVES<br />

a variety of<br />

businesses (on the phone or in person) can also be a<br />

great way to find jobs that may not be advertised.<br />

Applying and interviewing for a job can be an<br />

overwhelming process. To stay organized, it is helpful<br />

to create a file on the computer to house contact<br />

information, a summary of past employment or volunteer<br />

considerations.”<br />

experience, and reference information. This file can be<br />

accessed for each application which will save time and<br />

frustration. Whenever possible, seek out the assistance<br />

of a vocational rehabilitation counselor to provide<br />

structure and guidance. They can also assist with<br />

interview techniques, disability disclosure (if applicable),<br />

and communicate any accommodations required.”<br />

M<br />

Giana Ferrari Ayers<br />

Ferrari Resource Group, Inc.<br />

28379 Davis Parkway Unit 801 (Clarus Center)<br />

Warrenville, IL 60555<br />

giana@ferrariresourcegroup.com<br />

630-393-0499 (Fax)<br />

gianaferrari.com<br />

12


GOING TO COLLEGE<br />

Going off to college is a milestone for many<br />

high school students, who may start their college prep<br />

as early as their freshman year of high school. They get<br />

on the “college prep” track for their coursework, take<br />

honors or advanced placement (AP) classes, do<br />

extra-curricular activities, and so on, at least in part<br />

to develop a “resume” that will look good to colleges<br />

of their choice.<br />

The college prep process can be similar for students with<br />

learning challenges, but they will typically need supports;<br />

not just for succeeding with their high school classes,<br />

but also in preparing for and succeeding in college.<br />

While supports are typically available during the high<br />

school years, particularly for students receiving special<br />

education services, those supports and services are not<br />

typically “baked into the cake” at the college level.<br />

That being said, all is not lost. Students can audit<br />

classes of interest (no-credit option) and some colleges<br />

and universities have formal programs set up that<br />

provide supports, but treat these students the same as<br />

any other college student. There are also organizations<br />

and businesses that work with students and their<br />

families to meet the challenges involved in preparing<br />

for and succeeding in college.<br />

One such organization is JJB Educational Consulting,<br />

Inc., which serves students with learning differences.<br />

They provide assistance to students with learning<br />

differences and their families. They help high school<br />

students select classes, extra-curricular activities, and<br />

summer options that meet their interests. They discuss<br />

learning support options and assess independent<br />

living skills. They assist in all aspects of the college<br />

testing, application, and selection process. They have<br />

presentations for students and families at local libraries<br />

and other locations.<br />

M<br />

Jordan Burstein<br />

JJB Educational<br />

Consultants Inc.<br />

1441 Hemlock Knoll Terrace<br />

Northbrook, IL 60062<br />

847-940-8090<br />

JJB-edconsultants.com<br />

collegesupports.com<br />

jordan@jjb-edconsultants.com<br />

13


Man’s<br />

&<br />

Woman’s<br />

&<br />

Child’s<br />

Best<br />

Friend<br />

For most families, a dog is just a pet, who provides companionship, learns<br />

tricks that the family teaches him or her, and gets taken for walks daily. It’s<br />

a different slant, however, for individuals with disabilities. For them, a dog<br />

is a trained caregiver that performs needed tasks and/or provides them the<br />

independence to achieve desired milestones in their lives.<br />

A number of organizations, mostly not-for-profit, exist throughout the<br />

United States to train these dogs and provide them to families. One such<br />

group is Canine Companions for Independence, which has a Greater<br />

Chicagoland chapter.<br />

Canine Companions is a 501(c)(3) non-profit organization that provides<br />

highly trained assistance dogs and ongoing support to ensure quality<br />

partnerships. They train dogs to help adults with physical disabilities by<br />

performing daily tasks, alert the deaf and hard of hearing to important<br />

sounds, enhance independence for children and adults with physical,<br />

cognitive and developmental disabilities, and work with professionals<br />

in a visitation, education or healthcare setting.<br />

Canine Companions for Independence can be visited at their website.<br />

The Greater Chicagoland Chapter is a local volunteer group dedicated<br />

to fund raising, spreading awareness and supporting local volunteer puppy<br />

raisers. The chapter can be visited at their Facebook page and emailed.<br />

M<br />

14


Customized employment: carving out a job<br />

Among the terms and acronyms bandied about around<br />

families who have children with disabilities, customized<br />

employment comes to or near the top of the list for some<br />

families as the child becomes a teenager and young adult.<br />

It can be an approach to finding or creating employment<br />

that focuses on folks with disabilities who have difficulties<br />

“A Carve Out is an employment<br />

opportunity; working in the community,<br />

in a position that was created with the<br />

Job Seeker’s strengths in mind.<br />

and challenges beyond the usual scope of the traditional<br />

vocational rehabilitation system. Some of these people may<br />

have a skill or talent, such as counting cards in Las Vegas (and<br />

thus saving their brother’s business) that brings in enough<br />

income that they are considered gainfully employed. Folks in<br />

this category tend to have talent in the creative or performing<br />

arts, or perhaps a focused interest in something that can be<br />

developed into a profitable business.<br />

The customized employment process focuses, first, on<br />

So, who creates these jobs? I do - as a Case Manager/Career<br />

Counselor helping adults with varying disabilities obtain and<br />

maintain employment. I believe information is power; the<br />

intent is to share my approach to creating sustainable and<br />

successful Carve Out job opportunities, with you the reader.<br />

Let’s get started!<br />

When would a Job Seeker benefit from a Carve Out?<br />

Here are a few instances:<br />

discovering the challenged individual’s likes, dislikes, skills,<br />

interests, and so on. Based on where this process leads,<br />

self-employment options may be explored, either along with<br />

or instead of community employment. Businesses that might<br />

When an individual’s maximum work hours per week are less<br />

than 10 hours (based on recommendations of their health<br />

provider to maintain physical and/or emotional stability).<br />

employ the person can be identified and the counselor, in<br />

effect, scouts them. He or she will talk to the owner or<br />

manager, employees, read job descriptions, and so on, to<br />

determine if the business’ operations can be streamlined in<br />

When individuals need long term on-site support (on the job<br />

support/Job Coaching, due to disability and level of support<br />

needed to maintain successful employment).<br />

some ways and a job “carved out” for the individual with a<br />

disability. Basically, the goal is a “win-win” situation for<br />

the business and the individual with a disability.<br />

Successful customized employment outcomes don’t just<br />

come out of thin air or through wishful thinking (much as<br />

When an individual whose work skills and strengths are<br />

specific to one area or task (this Job Seeker would likely be<br />

most successful with an accommodating employer, who can<br />

Carve Out a position, performing a single or minimum<br />

number of tasks).<br />

I’d like to believe otherwise). They depend on the individuals<br />

with disabilities themselves, their families, friends, vocational<br />

skills counselors/professionals, non-profit organizations, and<br />

companies that specialize in the field.<br />

One such professional is Jody Verble, who works as a career<br />

If it has been determined that an individual would be most<br />

successful in a Carve Out position, the first step towards<br />

this goal is to address the Job Seeker’s Stability: Medical,<br />

Psychiatric, Residential and Transportation (for more details,<br />

refer to the 4 Areas of Stability).<br />

counselor helping adults with various disabilities to maintain<br />

community employment. She will elaborate on customized<br />

employment and how individuals, families, advocates, and<br />

caregivers can participate in the process.<br />

Why is this important?<br />

If the Job Seeker is actively suffering from psychiatric and/or<br />

medical condition(s), is ‘in between residences’ or does<br />

15


Job Seekers<br />

not have a reliable way to get to/from work (i.e., is lacking<br />

Interest<br />

stability in one of the 4 Areas); short- or long-term success<br />

of employment (even a Carve Out position) will likely be<br />

negatively affected.<br />

Job Seekers<br />

Likes<br />

The next step is to identify appropriate job matches. I use<br />

a questionnaire, taking a person-centered approach, to<br />

engage the individual and gain feedback on their goals,<br />

interests and needs. Feedback is key. The initially reported<br />

Job Seekers<br />

Dislikes<br />

needs, interests, goals often change throughout the job<br />

search process. Therefore, I request feedback weekly<br />

and adjust the job search focus as needed.<br />

Job Seekers<br />

Skills<br />

As the Case Manager, I always consider the following<br />

information, when seeking a Carve Out on behalf of the<br />

Job Seeker: a job that meets their interests, strengths,<br />

work hours, transportation needs, work environment, work<br />

restrictions reported, and all other needs/preferences reported.<br />

I work with the individual’s strengths and work around<br />

potential barriers. By anticipating the Job Seeker’s individual<br />

barriers to employment, and reduce/eliminate those barriers<br />

with a plan, employment goals can be realized with more<br />

success and less frustration. This is where Preparation<br />

Meets Opportunity.<br />

How do I go about finding a Carve Out job?<br />

I have found that privately owned companies, not national/<br />

chain companies (for example), are excellent places to seek<br />

A Carve Out position is beyond a reasonable<br />

accommodation(s); it’s a request of an employer to create a<br />

position that otherwise did not exist. Once the Carve Out is<br />

secured, on the job support/Job Coaching may be of benefit<br />

to the New Employee: learning their new job task(s) and<br />

company policies, developing natural supports, communicating<br />

with co-workers and management, and the numerous<br />

other details associated with starting a new job - all in an effort<br />

to support the goal of successful community employment.<br />

Carve Out opportunities. With privately owned companies the<br />

owners and/or decision makers are more accessible to discuss<br />

their company’s needs, which then allows me to speak with<br />

the decision maker about possible Carve Out opportunities<br />

and the value the Job Seeker/candidate would bring to the<br />

team if he or she is given the chance.<br />

Why not national/chain companies?<br />

My experience has been that ‘chains’ are duplicated systems,<br />

The result:<br />

Carve Outs create employment opportunity for those<br />

individuals who require more support. Coupled with an<br />

appropriate job match, working in the community also:<br />

promotes independence, builds self-confidence, boosts<br />

self-esteem, not to mention - the increased pride and dignity<br />

that results from a hard day’s work and the purchasing power<br />

of the paycheck that follows - priceless.”<br />

often with corporately driven budgets that support those<br />

(duplicated and proven) systems, which limits that company’s<br />

local location’s management from making Carve Out<br />

opportunity decisions. Example: during a recent conversation<br />

with a Store Manager, of a national chain retail location,<br />

I asked if she had ‘stock only’ job opportunities - as the Sales<br />

Editor’s Note: The process of customized employment works<br />

differently for each individual because each person brings<br />

their individual strengths, interests, and abilities to the process.<br />

Therefore, this article, by necessity, is rather general. For more<br />

specific advice, please contact Jody directly.<br />

Associate job description for her location included ‘cross<br />

training’ and register work. The response received<br />

included the Store Manager’s frustration that all hires are<br />

required to perform register duties, due to the companies<br />

Contributor Jody Verble, a suburban Chicago resident,<br />

maintains a blog, Disability Peer Advocates, which offers<br />

tips to job seekers. She can be reached by email.<br />

M<br />

limited monthly payroll budget.<br />

16


What’s Your<br />

Emergency?<br />

Children (and adults) with developmental disabilities are<br />

not a different species from the rest of us. They act up or<br />

act out for the same reasons that we all do. Their<br />

behaviors often fall into the good (or at least tolerable),<br />

annoying, or potentially expensive (hello, clogged toilet!)<br />

categories, but don’t make them a true danger to<br />

themselves or others.<br />

That is not always the case, however. Circumstances at<br />

home or school may deteriorate and suddenly an<br />

individual is acting out in ways or to a degree that is<br />

unprecedented for him or her. That individual now<br />

poses a threat to his/her safety and the safety of anyone<br />

in range. So, what’s a parent to do? Calling the police<br />

is a frequent response.<br />

As police officers are likely to come into contact with individuals<br />

in crisis, whether in public or through a<br />

domestic disturbance call to 9-1-1, police departments<br />

throughout the United States are responding to these<br />

situations. Their priority is to keep everyone involved in<br />

a particular situation safe, including responders, the<br />

individual, his/her family, and members of the public.<br />

In Aurora IL, where I live, the police department has<br />

instituted a community policing program called “Crisis<br />

Intervention Team”. The information included here about<br />

it comes from a handout I obtained from police officer<br />

Douglas Rashkow at a recent resource fair hosted by<br />

the Indian Prairie District 204 Special Needs PTA.<br />

“The Aurora Crisis Intervention Team (CIT) program<br />

consists of officers specially trained to respond to those<br />

in crisis or with mental health emergencies, including<br />

17


people having suicidal or homicidal<br />

ideation, psychosis, or in a mental health,<br />

developmental disability, or brain disease<br />

(dementia) related emergency), to help them<br />

safely through the crisis and direct them to<br />

appropriate resources. The CIT program also<br />

is called upon for domestic disturbance or<br />

quasi-criminal related issues or crisis.<br />

Our CIT partner with local service providers<br />

and definitive care systems, State, Federal,<br />

local and privately funded, to make the best<br />

referrals and deferrals for continuing care. Our<br />

CIT respond during crisis, but also meet with<br />

families who have, or are expected to have<br />

crisis, to avoid critical incidents, and after<br />

crisis to ensure continuing safety and build<br />

relationships.<br />

The Crisis Intervention Team Program also<br />

works hand in hand with the Elder Service<br />

More Information or Enroll in S.N.A.P.P.:<br />

Aurora Police Department<br />

1200 E. Indian Trail, Aurora IL 60506<br />

630-256-5000<br />

You will complete a S.N.A.P.P. Release Form<br />

Officer Program, focusing on senior safety<br />

issues and the Special Needs Aurora Police<br />

Program (S.N.A.P.P.), for wrap around services<br />

for those with disabilities including, but not<br />

limited to, mental illness, dementia, or<br />

developmental disabilities”.<br />

M<br />

18


The<br />

Entrepreneurship (as in owning/operating a<br />

business) is a milestone/goal to which some<br />

aspire, and one to which some people with<br />

disabilities regard as preferable. Its potential<br />

Birth<br />

for income coming from something you like<br />

to do and are good at without having to be<br />

hired and fit into an established workplace<br />

can be attractive.<br />

Care<br />

As the parent of a child with a disability, this<br />

option, suggested for my son from school<br />

district transition personnel, basically<br />

amounts to “go forth and micro-enterprise”.<br />

Feeding<br />

Though I know it’s probably grammatically<br />

(though perhaps not politically) incorrect to<br />

use micro-enterprise as a verb, this may not<br />

be such bad advice, especially for the more<br />

and<br />

entrepreneurially minded among us.<br />

However, the advice did not come with<br />

any practical suggestions for starting a<br />

Maintenance<br />

micro-enterprise and making it into a<br />

of<br />

a<br />

profitable, enjoyable, and fulfilling venture<br />

for all involved. So, like the Little Red Hen,<br />

I will do that myself (but don’t expect a loaf<br />

of bread at the end of this article!).<br />

The conception and birth of a micro-enterprise<br />

can start with four one-word questions:<br />

who, what, where, and how (not necessarily<br />

in that order).<br />

Micro-enterprise<br />

19


What?<br />

What do I plan to do or make, produce,<br />

distribute, and sell?<br />

Some people base a business on a talent or skill for<br />

which they have an interest, maybe even a passion,<br />

such as painting. Others design or invent a product<br />

that solves a problem affecting them or a family member;<br />

such as an easy-fastening mechanism for people who<br />

have arthritis. Still others base a business on a service<br />

that businesses and individuals need: lawns have to be<br />

cut, papers shredded, attics cleaned, and so on. And<br />

some people and businesses don’t have the time, ability,<br />

or desire to do these things themselves, so they’re willing<br />

to “outsource” them (which is where you come in).<br />

Who?<br />

To whom do you plan to sell your product/service.<br />

Some, by their very nature, are local, so potential<br />

customers or clients are folks in your neck of the woods.<br />

Lawns cannot be exported to China. Others, with the help<br />

of computers and the internet, can be regional, national,<br />

or even global in scope.<br />

Where?<br />

Where will the product be displayed or sold?<br />

Artistic work typically shows up at art galleries, “flea<br />

market” type events and websites such as Etsy. Writers<br />

can blog. Clothing products can be sold at retail stores<br />

(usually distributed through a wholesaler).<br />

How?<br />

How will the product be displayed or sold?<br />

This question is similar to the where question, and<br />

can often produce the same answer.<br />

20


As you may have realized by now, answers to<br />

these 4 questions often overlap, and collectively can<br />

provide the underpinnings of a business plan. A<br />

business plan, whether informal or professionally<br />

done, helps you focus on the essentials of your<br />

business. It is required if you will approach a<br />

traditional loan source, such as a bank, for financing.<br />

And it may be necessary for types of creative<br />

financing, such as venture capital, whether from<br />

an established fund or through crowd-funding.<br />

The following resources are both based in the<br />

Chicago area. Life’s Plan Inc. Pooled Trust Services<br />

can help with financing for individuals who meet their<br />

criteria. Perk Center Café can serve as an example<br />

or inspiration for folks looking to start their own<br />

micro-enterprise.<br />

Life’s Plan Inc. Pooled Trust Services - website<br />

Life’s Plan Inc. Pooled Trust Services periodically<br />

offers Micro-industry grants of up to $2,000 for adults<br />

with disabilities or mental illness who meet Social<br />

Security’s disability eligibility criteria under the<br />

Supplemental Security Income. This is a one-time<br />

award for individuals or partnerships (less than 4<br />

people). Details about proposal requirements can be<br />

found at Life’s Plan’s website and questions/inquiries<br />

can be emailed to Scott Nixon.<br />

Local (Chicago Area) Micro-Enterprise<br />

The Perk Center Cafe is a not-for-profit business<br />

enterprise created through Great Potentials, Inc.<br />

and by four parents and one sibling of an<br />

individual with intellectual/developmental disabilities.<br />

It is a collaboration with the Glenview Park District,<br />

who donates the space for the Cafe. The Perk Center<br />

Cafe’s goals are four-fold: to provide employment,<br />

volunteer, and vocational training opportunities to<br />

individuals with developmental disabilities; to offer<br />

good quality food to customers; to build positive<br />

relationships in the community; and to serve as<br />

model to others who might wish to create<br />

businesses for the purpose of employment of<br />

people with disabilities. Feel free to visit the website.<br />

Contact Gail Metrick by email. M<br />

21


Having our Baby!<br />

The road to parenthood, symbolically speaking, defies basic<br />

arithmetic as the only time one plus one equals three. It is considered<br />

one of the major milestones of any given person’s adult life. While not<br />

all people choose to have children; and some have medical issues that<br />

make having a biological child risky or impossible; most everyone<br />

intent on having and/or raising a child finds a way to do so. And,<br />

generally speaking, that process moves forward for individuals and<br />

couples without interference from outsiders, other than those involved<br />

in the process of adoption.<br />

That is not always the case for adults with disabilities. <strong>Issue</strong>s for them<br />

range from having to adapt how they provide care for their child due to<br />

the disability to dealing with child welfare authorities concerned that the<br />

disability affects their fitness as parents. The first issue is easier to find<br />

solutions for; parents can get very creative about this. My mother-in-law<br />

told my husband a story about a woman she knew with no arms who<br />

gave her baby baths using her feet.<br />

22


23


For a firsthand account of parenting when you have disabilities; I am pleased<br />

to introduce Ashley Taylor and her husband, with some tips from their blog on<br />

caring for a child when you have a disability. Depending on your disability,<br />

some tips may be more applicable to your situation than others. Some of the<br />

advice, such as child-proofing, also applies to families where the parents don’t<br />

have a disability.<br />

So, without further ado, I present the following tips, excerpted from Ashley’s<br />

article “Disabled parents can prep home and life for their new arrival”.<br />

“Replace stairs with a ramp. Navigating stairs while carrying a baby can pose<br />

a risk of tripping. Steps-free entrances and pathways are especially important<br />

for individuals with mobility disability as they make it easy maneuver within<br />

the home to effectively cater to the baby’s needs.<br />

Expand your corridors and doorways. Wide doorways offer enough clearance<br />

for people using wheelchairs and walkers to safely get through entrances.<br />

Install non-skid flooring. Skid-resistant flooring is vital for both parents with<br />

disabilities as well as their developing children. As your child learns to crawl<br />

and walk, they will need a safe space to practice on. Consider installing vinyl,<br />

linoleum or heavy-duty plastic mats. If you decide to carpet, ensure that the<br />

carpet is fastened on the floor and it has an even texture.<br />

Child-proof your home. For instance, install smoke detectors, carbon<br />

monoxide detectors, corner guards on the sharp corner guards of the furniture,<br />

install outlet covers and keep away hazardous items out of your child’s reach.<br />

Depending on your type of disability, you will need specialized baby care<br />

products and equipment. For instance, if you are a parent with a mobility<br />

disability, the regular baby carrier may not work well for you. If you are using<br />

a wheelchair, you may use a lap baby to hold your infant in front of you.<br />

Similarly, a parent with a hearing disability may need to invest in a babble<br />

band in place of a baby monitor. There are great baby care products for parents<br />

with disabilities. There are also numerous resources both online and offline<br />

that you can leverage for support in your parenting with disability journey.<br />

These include both governmental and non-governmental agencies, websites<br />

and community-based support groups.<br />

While being a parent with disabilities presents unique challenges, with the<br />

right information, resources, planning and preparation, it can be a journey<br />

full of joy and satisfaction. Take time to prepare your home, get baby care<br />

products that are appropriate for your type of disability and identify support<br />

systems and resources. Most importantly, take care of yourself so you can<br />

be able to take care of your child.”<br />

Ashley Taylor and her husband both have disabilities. Ashley blogs, which<br />

provides advice and resources for parents with disabilities. She can be reached<br />

through a contact form at the blog or by email.<br />

M<br />

24


Guardianship or<br />

Power of Attorney:<br />

What Gives?<br />

There is much confusion and controversy among parents<br />

of young adults with disabilities, particularly those with<br />

intellectual impairments, on how best to protect their physical<br />

and financial well-being; both when the parent(s) are alive and<br />

after they are gone. Some of these parents may also be children<br />

of elderly parents with physical or cognitive issues of their own.<br />

Guardianship<br />

• A judicial decision made when an individual has not<br />

designated a POA.<br />

• It is a request by someone other than the individual it is for.<br />

• Can be of the Person or of the Estate.<br />

• Can be Temporary, Limited or Plenary.<br />

• Is only revocable when an individual can produce proof that<br />

I have experienced those issues personally, and have gone<br />

the route of full guardianship for our son. However, we have<br />

an uncomplicated set of circumstances in which nobody<br />

contested the guardianship and there’s no money (assets)<br />

involved. For many families, this matter is anything but<br />

they have regained capacity.<br />

• The Mental Health Directive is included in the Guardianship.<br />

• It is a judicial order.<br />

• Judicial oversight and guidelines for Guardianship.<br />

• Expensive.<br />

“cut and dry”.<br />

It is always better to be proactive than reactive. Planning for<br />

I am pleased to introduce the organization “Living Life with<br />

Dignity” and present portions of their article, posted online on<br />

December 7, 2017, to address the difference between Power of<br />

Attorney (POA) and Guardianship, and outline the types, and<br />

pros/cons of each.<br />

your future needs can keep you independent longer and be more<br />

cost effective. If you put a Power of Attorney in place with<br />

someone you trust and you provide them with a detailed account<br />

of what you want (or don’t want), you are more likely to be<br />

cared for the way that you want and your money will go further.<br />

“Power of Attorney (POA)<br />

• A proactive decision made by an individual when they<br />

are of sound mind.<br />

• A designation of someone known and trusted to carry<br />

directives.<br />

• Can be for Healthcare or of the Property.<br />

• Two types of POA: one that is effective immediately and<br />

the other that requires proof of capacity.<br />

• A Power of Attorney for healthcare can be revoked at any time.<br />

• A Mental Health Directive is separate from the Power of<br />

Attorney and is needed in cases where the health issue is<br />

behavioral vs. clinical (IE: Bi-polar disorder).<br />

If you don’t have a Power of Attorney or a Mental Health<br />

Directive and you become incapacitated then anyone who has<br />

a vested interest in your welfare, whether family or friend, can<br />

petition the court for Guardianship. This gives you less choice<br />

of care givers and puts you at higher risk of not having your<br />

choices honored, potentially jeopardizing your independence<br />

and financial well-being. In many cases, when someone<br />

gets Guardianship, the wishes of the individual cannot be<br />

determined, and the ward is subject to what the guardian feels<br />

is in the individual’s best interest. Guardianship proceedings<br />

in themselves can be very costly. A contested Guardianship is<br />

even more costly.<br />

• Is not a judicial order.<br />

• No oversight for a Power of Attorney.<br />

• Cost effective.<br />

When referring to Power of Attorney for the Person or of<br />

the Property vs the different types of Guardianship, you are<br />

basically referring to managing an individual personally and<br />

financially. So, let’s look at the differences:<br />

25


Difference between Power of Attorney for Healthcare and<br />

Plenary, Limited & Temporary Guardianship<br />

In a POA for Healthcare your designee can make any decision for you without<br />

a court order. Once an individual has been declared by a physician to lack<br />

competency you simply have to present your Power of Attorney paperwork.<br />

However, with a Guardianship you have to follow the court order. Both types of<br />

Guardianship give certain or all power to act on the individual’s behalf; however,<br />

anything outside of the court order has to be approved by the court. For instance: if<br />

someone has a stroke, becomes dependent on life support and it is not in the court<br />

order, it is always a best practice to go to court to make the decision whether to end<br />

life or not. This protects the Guardian as well as the Ward. In addition, the Guardian<br />

of the Person has to file an annual report with the court as a status update affirming<br />

continuation of the Guardianship.<br />

Difference between Power of Attorney for Property<br />

and Guardian of the Estate<br />

It is a known fact that our ability to reason becomes compromised as we get older.<br />

In fact, studies suggest in some people it can be as early as 65. Having someone<br />

you trust to manage your financial affairs can prevent you from being exploited,<br />

provided the person you choose is of sound integrity. Sadly, I have seen many cases<br />

where individuals have been exploited by the Power of Attorney. Transparency and<br />

proper accounting are two ways a POA can avoid these issues. I recommend when<br />

choosing the POA for property, to pick someone that is good with their own finances<br />

if you want to ensure the safety of your financial future. See This Job Sucks!<br />

Choosing the right Power of Attorney is imperative.<br />

A Guardian of the Estate has little room to exploit anyone<br />

They have to account for every penny that is spent of your money. The court<br />

requires the Guardian of the Estate to produce a yearly report and to provide the<br />

court with an annual budget. The court will readily pick a family member or close<br />

friend over a Corporate or Public Guardian. It is standard practice for family<br />

members to contribute to the welfare of their loved one, while a Corporate Guardian<br />

or the Public Guardian charge for their services. For this reason, when the court<br />

determines someone is not of sound mind, the court will default for family or a<br />

loved one to be the Guardian if appropriate.<br />

Mental Health Directive<br />

The state of Illinois requires a Mental Health Directive in addition to a Power of<br />

Attorney for Healthcare for treatment of a Mental Health Disorder. I won’t go into<br />

the why’s or the politics around it, that is fodder for another blog (next month).<br />

Nonetheless, please note that if you are preparing your estate, this should be a<br />

consideration when putting your directives in order, regardless of whether you suffer<br />

from a mental illness or not. See What is a Health Directive for Dementia?<br />

Your Power of Attorney should know where you keep all of your important<br />

documents, and above all, be transparent. This way, if ever anyone wanted to<br />

challenge your POA’s intentions or abilities, you have everything documented.<br />

NOTE: POAs for Healthcare can easily be revoked, however, Power of Attorney<br />

for Property cannot.<br />

Guardians are mandated to do all of the things a Power of Attorney does and are<br />

appointed by and accountable to the court. A physician’s report as to whether or not<br />

the individual is capable of making their own decisions is a requirement of a petition<br />

for Guardianship but ultimately the court, not the medical professional, makes the<br />

determination and the designation.” M<br />

Living Life with Dignity<br />

333 N. Randall Rd., Ste. 106<br />

St. Charles, IL 60174<br />

630-549-0654<br />

www.lifewithdignity.net<br />

info@lifewithdignity.net<br />

26


Connections child care<br />

Child Care Connections links families to child<br />

care suited to children with challenges.<br />

Child Care Connections also provides informational<br />

articles (referencing North Carolina University<br />

Extension Service) about adapting child care<br />

Features a registry that both parents and<br />

providers can sign-up for when they are looking<br />

for, or offering, care for children with various<br />

challenges, such as developmental disability,<br />

programs to children with special needs. Once<br />

you sign-up you’ll receive the article Adapting<br />

the Child Care Environment for Children with<br />

Special Needs.<br />

autism, hearing impairment, vision impairment,<br />

and more!<br />

Check out our website: milestonesmagazine.net<br />

27

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