Title: So You Want To Live On Your Own - What's AT Got To Do With
It?
Presenters:  Laura Plummer and Cindi Pichler.
Date: November 25, 2003

OPERATOR:  Good afternoon and welcome to the NCIL assistive
technology conference.  Today's host will be Ms. Kristy Langbehn. 
During the discussion, all participants will be muted.  You will be allowed
to ask questions during the presentation.  To ask a question, you may press
the number 0 followed by the 1 key on your telephone and you will be
allowed to ask your question in the order it was received.  As a reminder,
the conference is being recorded.  And without further delay I will turn the
call over to Ms. Langbehn.

KRISTY:   Hello everyone I am the project director here at NCIL for IL
Net.  We are very glad you could join us for this training.  So you want to
live on your own, what's AT got to do with it?  As you know, this
conference is being brought to you by the IL Net, which is collaborative
project of ILRU and NCIL the National Council on Independent Living. 
It is a national training and technical assistance project to strengthen the
independent living movement by supporting centers and statewide
independent living councils.


IL Net offers workshops, teleconferences, technical assistance, online
workshops, training materials and other resources on operating CIL's and
SILC's, I am here at the NCIL office in Arlington, Virginia and our
trainer's Laura Plummer and Cindi Pichler are in Wisconsin.  We would
like to thank the independent living consultants for hosting Laura and
Cindi.  Today we have 18 sites representing 15 states and over 100
participants that are joining us through the Web cast.

I would like to thank our site coordinators also across the country for
participation and interested and preparing the materials for the site.

For those of you on the teleconference, we are taping this call and you will
receive a copy of the tape as part of your registration fee.  So if you prefer
not to take notes, you will have that to refer to later.

Please keep in mind that your feedback about this call is very important to
us because it helps us do a better job in the future.  So if you would take
just a moment right now and pull out your copy of your evaluation form
that your site coordinator has prepared for you in your participant's
materials, it will remind you to fill it out at tend of the call.

Please send them back to the NCIL office.  You will find the agenda today
on Page I.  If you want to turn to that page and the coordinator, just a
reminder to you, you will need to point out the corresponding page
numbers in Braille and large print for your participants.  I would like to
introduce Laura Plummer who is a resource counselor for the center for
independent living for western Wisconsin and Cindi Pichler who is with
the technology program at Independence First.  Now I would like to turn it
over to Laura.

 LAURA:    This is Laura Plummer and Cindi Pichler.  Thank you for
joining us today.  I am going to start out by just going through our agenda. 
We are going to be starting out with reviewing some assistive technology
myths, some of the big myths out there.  From there we will go into
Cindi's transition and assistive technology protocol and then following
that my transition and AT process, and then we will be wrapping it up.

We will be opening it up for questions in between each section, and I
wanted to review our learning objectives.  We are hoping that participants
will gain a basic understanding of the range of assistive technology.  We
like to explode some of the common myths surrounding assistive
technology.  We will be talking about some creative and cost effective
solutions for assistive technology, and learning how to help people live
independently in the community and in getting out of an institution.

We are hoping that you can learn from two of these successful
frameworks for incorporating assistive technology into independent living
services.  And we will begin with the myths.  This is on Page 1 of your
handout.

 CINDI:    This is Cindi Pichler by the way. Page 1, probably the biggest
myth that I think all of us who provide assistive technology services faces
the idea that Medicaid pays for just about everything.  We have had
people thinking that Medicaid will pay for ramps and adaptive clothing
and a large number of things that it really does not pay for.

So what does Medicaid pay for?  In order to qualify for Medicaid to pay
for assistive technology, it must comply with the definition of medically
necessary.  That definition is established individually by each state, so in
every state in the union it's a little bit different. There is a great deal of
uniformity, but each state is allowed to develop their own definition of
medical necessity.  Generally, it means the devices prescribed by a
physician is used to restore or approximate the normal function of a
missing, malformed or malfunctioning body part, it's directly related to a
diagnosed medical condition and the equipment is expected to improve the
user's function.
When I was researching this, I found an excellent Web site by the North
Carolina assistive technology project, and they have broken down all of
these funding issues into a delightfully readable and understandable
format.  Their Web site is www.ncatp.org.  And they have a section on
funding where they explain Medicaid and Medicare funding very, very
nicely.

Household items are generally not covered under medical necessity.  Air
conditioners, air filters, food blenders, orthopedic mattresses, that kind of
thing are generally not covered. Authorization for durable medical
equipment is limited to the lowest cost item that will adequately serve the
recipient's medical needs. Again, when Medicaid is paying for assistive
technology, it does not pay for the best it pays for the cheapest.

The second part of the Medicaid myth is that -- or the Medicaid
requirement is that it must meet the definition of durable medical
equipment.  Now, that definition is uniform across all states and that is a
four part definition, the equipment must withstand repeated use, must be
primarily and customarily used to serve a medical purpose, it's generally
not useful to a person in the absence of illness or injury, and is appropriate
for the use in the home.

And that, again, is why Medicaid does not fund ramps, vehicle
modifications, computers and most cognitive aids or they are insurance
because they do not meet those definitions.  I do want to take a few
seconds to explore Medicare because that is another form of insurance that
is often used to fund assistive technology.

Medicare covers certain types of durable medical equipment under certain
circumstances. Medicare only covers durable medical equipment if it is
necessary and reasonable for the treatment of an illness or injury or to
improve the functioning of a malformed body part.  It requires a
prescription and a certificate of medical necessity that must be provided
by the doctor.  Medicare pays 80 percent of whatever they establish as an
approved amount for whatever technology it is.  So whatever the cost that
they will approve, they will only pay 80 percent.  The consumer has to pay
the remaining 20 percent.  And they have to pay up front, Medicare
reimburses.  So the person must be able to afford the entire cost in
advance.  And Medicare does not cover any assistive technology for use in
the bathroom.  The phrase is Medicare coverage stops at the bathroom
door.  So for people who are looking at moving out of an institution,
Medicare will not cover anything related to bathroom equipment.  

LAURA:    The next myth that we hear from consumers and community
members is the landlord will pay for the technology.  People think that if
they are in an apartment, that all they need to do is ask the landlord and he
has to provide that. That is a myth.  Housing is not an issue that is covered
by the Americans with Disabilities Act. The Fair Housing Act actually
states that landlords do not have to pay for the modifications, only to
allow the modifications or adaptations to be done. The tenant then must
return the premises back to original condition unless the landlord grants
that; For example, the grab bar can stay in place.  The landlords are only
responsible for visual doorbells and smoke alarms.  Cindi.

CINDI:    I want to revisit Medicaid for a few seconds because I neglected
to mention some places and resources that are in our manual.  On Page 38
there is a handout on how to deal with Medicaid denials, and the
interesting thing about Medicaid denials is the dealer is the one who
receives the notification, but the Medicaid carted holder is the one who
has to appeal.  So there has to be some good communication back and
forth between the equipment dealer and the Medicaid recipient.  And then
on Page 44, there are several Web sites related to Medicaid funding under
the funding list.

The next organization or the next myth that I would like to deal with is
that disability organizations will pay.  People often assume if they have a
specific disability such as multiple sclerosis, that MDA will pay for
adaptive equipment.  That is not always the case.  Not all disability
organizations have funding available. Most are local chapters and they
may not have a resource for funding adaptive equipment.  They usually
are single disability founders, so if somebody has multiple issues such as
diabetes and a stroke, they have to approach each individual disability to
that individual organization.

If the organization is indeed a grantor, must funding is small.  You are
looking at about a 300-dollar payment or less in most cases.  So while
there might be funding through specific disability organizations, it's not
necessarily a significant amount.  Laura.

 LAURA:    The fourth myth that we want to address is that money is
available now.  Quite often consumers are under the impression that that
money they can get it right now.  The reality is that there are waiting lists
for everything, and pretty much every state in the country, so there does
need to be some planning that is put into place when dealing with assistive
technology needs. It's not magic here is the money; there you go. Cindi.

CINDI:    Some other things that we ran into misconceptions is that for
people who are going to need ongoing types of assistance, there is an
assumption that 24 hour care is usually available in a home situation.  That
is not the case.  Realistically, in most states, the most you can get is six
hours a day.  And that is under a Medicaid funded personal care program. 
Sometimes if the state has a waiver program, there may be a few
additional hours, but at the most you are looking at probably eight hours
of funding for personal care.  So usually somebody who needs personal
assistance is looking at having to fill in 16 hours of care either through
using assistive technology or an unpaid caregiver.

The exception to that rule is if the person is ventilator dependent, they
may be able to get 24 hour nursing care in a home situation if there is a
ventilator.

Another misconception that we run into a lot is that the caregiver is more
capable of giving assistance than they actually are.  Paid caregivers
usually have restrictions on home making activities.  If the person needs
assistance with housekeeping, laundry, errand service, that kind of thing,
the caregiver may not be allowed to do it if they are paid by a third party.

Supervision is not considered medically necessary, so if the individual has
Alzheimer's or some other type of cognitive disability where supervision
is about the only need they have, that is not usually funded by any type of
funding source.  And paid caregivers cannot do child care, and we see this
a lot with the courts, is they will have a parent with a disability and they
will assume that they can go out and pay somebody to take care of their
child, and, again, that is not something that is a reimbursable expense.

We really try very hard to encourage people not to put a bigger burden on
the caregiver than they already have, even with the use of assistive
technology.  Some devices are actually more of a pain for the caregiver
than they are help for the user.  And a prime example is a page-turner.  A
page-turner will turn the pages of a book for somebody to allow them to
read more independently, however, it usually requires two to three times
the amount of work on the caregivers part because they have to set up the
book, calibrate the page-turner, break the binding on the book and come
back periodically to recalibrate the page-turner so it's actually more work
for the caregiver than if they just came by every couple of minutes and
flipped the page for the person.  Laura.

Okay, the last one is that there is an assumption that the person with a
disability is unable to work and that is just really not the case. A lot of
people with disabilities are capable of working with assistive technology. 
There is a lot of work incentives out there that can help people. That is a
whole other teleconference, but to assume that the individual with the
disability is not able to work is something that we run into a lot and we
really try and stress that that is not the case.  Are there any questions?

KRISTY:   Michelle, can you see if there are any questions.

OPERATOR:    If you have a question at this time, you may press the 01
on your telephone. There are no questions at this time.

KRISTY:   I will turn it back over to you guys.

CINDI:    We developed in cooperation with UW stout and the Wisconsin
department of public construction a proceed Poe Colorado for helping
people assess how to determine what type of assistive technology an
individual may need.  This is a cooperative effort and we really thank you.
(Inaudible) for all their hard work. This assistive technology protocol is
designed to just help people focus and figure out what it is that is really
necessary.  You do not have to use every page in the protocol.  It will not
give you specific technology, but what it will do is generate some ideas.

There is a lot of good assistive technology that can be found in the regular
market, but sales people are not trained in assistive technology, so if you
go into a store and say I have had a stroke and I need a food processor I
can use, you are likely to scare the clerk.  Whereas if you go into a store
and say I really need a food processor that is easy to clean and can be used
one hand, then you are giving the clerk the information they need to help
you.  And that is what this guide is designed to do.

The first page of the guide is the assistive -- is titled assistive technology
transition protocol.  It's page 2 of the manual. It just asks a number of
questions, but what it's looking at doing is identifying whether or not the
person is in school so that if there are accommodations that can be
provided through school, we will know that.

If they are working, where their income is coming from, how much we
have to work with, what kinds of insurance they may have and what other
types of social services they may be able to access.

Page 3 is just for notes, anything that might be relevant, and this is where
you ask other questions about what else is going on in the person's life.  It
might be that if the individual is living with a caregiver, that the caregiver
is responsible for more people than just the person with the disability.  Or
it might be that they are a rent error some other relevant thing may have
come out during your interview with them on Page 2 and you put the notes
there.

Then we move into the protocol itself, and I am just going to highlight
some of the main points. If you look at the bottom of each page you will
see a grid and the grid has blackened out boxes.  Those are funding
sources for adaptive equipment that cannot be used.  If it's black, that
funding source does not pay for that type of equipment.  And as we go
through, you will notice that a lot of times Medicare, Medicaid and private
insurance are blacked out.  You cannot tell -- I am sorry, you can tell that
they do not pay for this.

The first page, page 4, deals with cognitive issues and what we are
looking at is issues of over stimulation, organization, memory, and
judgment. These are reasons most often that people are sent to a facility. 
It's that the person cannot remember what they need to do, organize their
bills, they cannot get things paid for and they cannot remember.  So this
section asks a number of questions on that and what we encourage is that
you try to find out how the person likes to get their information, and you
do not need to be a psychologist.  Just ask them if you hear something or
if you read it, which are you likely to?  And try and Taylor what you are
doing to the person's individual learning style.  You do not want to be
providing tone reminders to somebody who likes to read and you do not
want to be leaving notes for somebody who likes the hear things.
Page 5 deals with communication issues; and there are a number of
different issues on this page. We are looking at hearing as well as the
ability to communicate verbally.  Any time augmentive communication is
used, than is any type of communication device that is not verbal, a speech
and language professional must be involved in the evaluation and
prescription in order for third party funding to pay for it.  So really for
those of us who are doing assistive technology services, if August come is
what we need, we need to just find a good speech and language person and
that is about as far as we can go.  However, there are a number of issues
around hearing and telephones and Laura is going to cover that.

LAURA:    This is Laura.  One issue I did want to bring up that is not
specifically listed out in this protocol is to really give some thought to
whose communication problem is it.  This consumer may be perfectly fine
with the way they are communicating.  They are getting along in their
community or their environment, not a whole lot of hassle.  Is it the
caregiver's or the community member's problem?  And trying to address
that with the consumer that maybe they do not need to be fixed, maybe the
caregiver needs to learn patience or learn an alternative way.

One example is a gentleman that I worked with that was hard of hearing
and had Parkinson's.  He had difficulty communicating with his wife, and
he had no interest in hearing aids or any type of communication device. 
And really she was the one that was having the communication barriers. 
He thought things were fine.  So what we did is we worked with the wife
and provided her a loan to try out a speech amplifier.  On low and behold,
she felt their communication improved.  She took it upon herself for
taking on that technology to improve their communication.  Cindi.

CINDI:    I think that is a really good point I was involved in a case where
the wife couldn't speak very loudly because of Parkinson's and the
husband couldn't hear and she needed assistance with getting her needs
met.  Sometimes when he wasn't in the room she needed a way to get his
attention.  So we used a vibrating pager.  In other situations you can use a
portable doorbell instead of some of the more high tech solutions.

And communication is not only talking and reading and writing, it's
communication with the whole environment.  As Cindi indicated knowing
that you are communicating with your environment, is the phone ringing,
is the door going off, and those sorts of issues also fall under
communication.

CINDI:  There was a question that arrived before the teleconference
regarding is there a voice dialing phone that is affordable?  So we just
wanted to quickly address that for the individual that E-mailed or called in
that question.  The voice dialing or voice-activated phone that we would
begin looking at for an individual -- this person's question wanted to know
what's out there.  Sip and puff was not working in his environment due to
his cats -- pets that were able to activate his sip and puff phone.  I would
actually like to see that.  What we were looking at is a phone called the
dialogue RC200.  It is a voice answering phone and then it can be dialed
with switch controls.  That is something that could be mounted on to the
wheelchair and any type of switch, be it a pillow switch or one that I have
used frequently is a twitch switch, which attaches to any area of the skin
that can move like your eyebrow or your forehead and the pets might be
less likely to activate the phone with that type of switch vs. the sip and
puff.

The second part of that question related to how to get that funded.  I am
not aware of where this caller was from, but my first recommendation
would be to look at his state's telephone access program, which he should
be able to find through his independent living center in that area.  Cindi.

CINDI:    I wanted to quickly address some needs for people who are
using communication devices.  Some of the simpler and more reasonably
priced communication devices do not need a speech and language
pathologist, but one of the most frequently occurring mistakes that people
have when they get a very simple communication device is the first thing
they put on is the yes/no.  The second thing they put on is something
related to toileting, and then the third thing is something related to food or
drink so that the person may have a 16 message communication device,
and we have now used up four or five slots with yes, no, potty, thirsty,
hungry.  Those are usually things that people have a way to communicate. 
When you are using some of the smaller low-tech devices, what you want
to do is put on some of the surprises that people cannot communicate or
give them a way to take control of the communication system.

Very often people who have had strokes have some ability to
communicate verbally if given time and patience.  So what you might
want to put on a small device is if you do not understand me, please ask
yes/no questions.  Or please let me finish my sentence or as one consumer
put on, stop talking until I am done.  Those kinds of control messages and
also escape messages.  So when people have trouble communicating
verbally it's in emotional situations, they are in pain or they are afraid, the
doctor is coming at them with a needle and they do not have a way to say
stop.  So these escape messages of stop or give me a minute are some of
these things you want to put on these very small devices.

Next we are going to move on to computers. Again, I am sorry, I forgot. 
The Web sites for augmentive communication are in your handout on
Page 42.

Now we will move on to computers.  We get a lot of requests for adaptive
computer equipment and adaptive computers.  They can make the
difference between somebody sitting at home not doing anything and
being functionally employed.  They can make the difference between
somebody being able to communicate and not communicate.  They are
wonderful tools.  No funding source short of the division of vocational
rehabilitation will usually buy the computer.  You may be able to get
funding for some of the adaptive peripherals, but very rarely for the
computer itself.

The more complex the computer adaptations, the less likely the person is
to be employed, and that is an unfortunate reality.  If the person requires a
huge amount of computer adaptations, employers tend to get very scared. 
I. T. people tend to get very scared if somebody comes in with a lot of
different computer hardware and software.  So generally when we are
looking at computer modifications for people, we start with system level
modifications.  Can you turn on sticky keys?  Can you adjust the
background color or the font size or the key repeat?  Most people do not
realize that these features are built into the computer and it's free.  But a
lot of adaptations can be accomplished at the system level.  

I do want to address a little bit about voice recognition because that is the
hottest topic on computers that is out there at the moment.  First of all,
voice recognition is not a computer; it's a piece of software.  So there is no
such thing as a talking computer.  It's just a piece of software, but voice
recognition does not interface with all work-related software.  So many
people assume that if they get voice recognition, they will be able to get a
job when in reality it may not interface with a reporting system or with
some type of recording or whatever individual software that was
developed for a specific business.

Voice recognition works best on word processing.  So voice recognition
users really need to be looking at jobs that have word processing as their
primary tool.

Another issue around voice recognition is privacy.  So if whatever it is
that is being done with this software is private, the person needs to have a
private office.  If there is a confidentiality issue, again, it's not very good
in accounting departments, which tend to be cubicle.

There is a list of computer modifications on Page 43, computer hardware
and computer software Internet sites that can be very useful.

Page 7 refers to daily living.  Modifications to the architectural
environment may facilitate daily living skills for a lot of people, but
unfortunately environmental modifications are very hard to fund.  Again,
Medicaid, Medicare does not usually fund that.  You need to be looking at
social services to get a lot of environmental modifications.

Many of the -- many of the tasks on the top checklist here can be done by
a caregiver or facilitated by the use of adaptive equipment. Laura.

LAURA:    I just wanted to jump in here. What I find pretty cool these
days is how many things that we used to think of as assistive devices,
large handled peelers, spoons, all that, you can find those all at Wal-Mart
and target and Kmart now.  So is basic items are really -- have come down
to the every day level.  So it's a much more reasonable cost for folks.  It
used to be that you had to order a large handled peeler from a specialty
catalog.  Then pay ten dollars shipping and it resulted that the peeler was
20.  Now you can buy it at Wal-Mart for 2.99.  So it's kind of exciting to
see it come down to this level.

CINDI:    We have our senior citizens to thank for that.  They have been
lobbying for affordable equipment for a very long time.

We have a lot of resources for adaptive daily living equipment in the
manual.  There is an article on adaptive kitchen appliances on Page 22.
There is an Internet resource on Page 41.  There is an Internet resource for
architectural modifications on Page 43, and clothing on Page 43.  And on
Page 16 is a handout on different types of transfer aids.  And what I did
when I developed this handout was I put pictures of the different aids on
this. I did not necessarily put a name for it unless this was the only type of
device of its kind.

But what we wanted to have is to give people an option for the different
ways to transfer from self-transferring to assisted transferring, from
simple lifts all the way up to ceiling lifts so that people could get an idea
of what resources were out there.

A lot of times people will either assume you need to completely change
the architectural environment or do it yourself and there is a lot of options
in between.

LAURA:    Those options change daily of what's being manufactured or
being discontinued. We put a huge list of Internet resources at tend of the
handout and that was just Web sites where you can go to get ideas of what
might help in a specific situation.

Literacy is in here because a lot of the people that we serve may have
educational or vocational needs around the area of literacy, so, again, we
put in a lot of different types of adaptations down here and again if you
look at the funding, you will notice that insurance does not pay for just
about any of this.  Medicaid will pay for some low vision aids and that is
about it. Mobility -- that is on Page 9.

This is probably one of the single most important issues for people with
disabilities who are trying to live on their own is mobility.  And
positioning -- proper positioning is one of the biggest barriers to mobility
and it's one of the things that really need to be addressed in order for
somebody to be independent.

It's important for comfort, endurance, it can save on attendant care costs,
and it can save on medical costs.  And there is a movement afoot right
now that is actually very disturbing to me.  We used to see people in a
functional way.  We looked at what would make the person the most
independent in their seating and seat them in that particular way now,
sometimes functional seating encourages the development of deformities
so right now the pendulum has swung in the other direction and we are
looking at seating people in a therapeutic way to minimize deformities
developing, to minimize any type of physical complications from a seating
system.  And sometimes there needs to be a compromise between the two. 
I worked with a young lady who had cerebral palsy and she needed to be
leaning forward in order to use her hands.  As she aged, she developed a
spinal curvature and understandably her medical team was very concerned
about her breathing and some other complications of leaning forward all
the time.
So they sat her in a new wheelchair in a new seating system that was rigid
and fixed and could not be moved.  They sat her back to encourage her
back to be straight.  In that position, she could not use her hands.  In that
position, she could no longer feed herself, dial the telephone, or sign her
P. C. W. paychecks.  She could not operate her T. V. remote. She was
basically helpless when she was therapeutically seated.

There is a compromise.  Seating systems can move back and forth
between therapeutic and functional seating.  And that was something that
really didn't occur in that situation.
On Page 20 of this handout there is an article addressing the needs of how
to get did right wheelchair, and on Page 48, there are some resources for
Internet on wheelchairs.
Page 10, we have in our manual -- I do not know if you have it in yours,
but we have some duplicate pages so we are moving to page 10, which
addresses tolerance issues.  And tolerance is not only physical; it's also
cognitive and emotional. Sometimes the environment is too complicated
for somebody to tolerate.  And, again, that is addressed here and then the
last page, page 11 --

 LAURA:    I just wanted to mention tolerance.  Some of the questions she
has relate to carrying out tasks for a full workday or a full school day, and
dealing with hearing loss, that people do not think about hearing loss in
terms of those questions, and someone who has a hearing loss and is being
on all day trying to hear and be aware of everything, the amount of fatigue
that that can generate and if there are things in the environment, either in
the school or in the workplace that can help reduce that fatigue -- for
example, if someone is in an office with their back to the door and they
have a hearing loss, they are spending a lot of time during the day being
cued to see if someone is behind them or if someone is going to come to
the door.  A simple thing like a door knock light or even a mirror mounted
on the computer monitor can reduce that feeing and help them work better
longer.

 CINDI:    That brings to mind also the issues around attention deficit
disorder, learning disabilities, and various psychiatric disabilities.  We
tend not to realize that the office environment that we have created today
with a lot of cubicles and open spaces, how much of a burden that puts on
somebody with a cognitive disability to concentrate and to stay focused,
and at the end of the day, a lot of people go home and are simply ready to
crash because they have spent the entire day trying to manage their
environment.  So if there is any way we can manage this through assistive
technology or just environmental modifications, moving that copier to the
furthest corner of the room, anything that can make a difference.

 LAURA:  I had an office in an agency that had -- everybody else had
cubicles or most everyone did and the best piece of technology I had was
the door.  

 CINDI:  Honestly -- this is Cindi.  I had the same thing.  My last office
had the copy machine, the fax machine and the printer directly outside my
door.  The water cooler was across the hall and a coworker with a very
good sense of humor and a very loud laugh was right across the hall and
that door made the difference some days between me being productive
and me being not productive.

Last thing on this protocol is the transportation section.  It's on Page 11. 
There is a serious difference in resources between urban and rural.  I work
in an urban area.  We have transit, paratransit.  We have issues around can
the mobility devices the person is using be transported on the available
transit.  We have issues around paratransit; only goes two miles from the
nearest bus route.  Does the person live close enough to a bus route to
qualify for paratransit?  Those are the issues we face, and Laura is smiling
because she works in a rural area where the issues are vastly different.

 LAURA:    That is where we say transportation, what's that?  In rural
areas transportation is one of the major barriers to independent living, to
school, to work, so that is a whole different ball game in rural vs. urban.
Cindi.

 CINDI:  The type of mobility device the person is using is often what
determines what kind of transportation they can use and this gets into the
choice that people need to make between power wheelchairs versus
scooters.  Power wheelchairs are often better for mobility and positioning,
but you cannot get a power wheelchair into the average car. You
disassemble a scooter and throw it into a trunk, but to get a power
wheelchair into something, you need at least a minivan if not a full size
van and with that comes the higher car payment and the lift and the tie
downs and a whole huge amount of bills that wouldn't be there if the
person was using a device that could go into a car. There is often an
interaction between the mobility equipment and the type of transportation
the person may want to use, and for those of us who like to be in an urban
area, the paratransit and public transit will not transport certain types of
mobility equipment because of liability issues.  So it's the people's
advantage to know what kind of transit restrictions they may have if they
are dealing with a transit system.

As I said when I went through this guide, this is intended to generate
questions.  It's not intended to necessarily answer them, but it's intended to
generate questions and provide some options and to give you a starting
point for looking for adaptive equipment.  There is no one right thing for
every single situation.  It's usually a conglomeration, there are usually
several choices and what we were hoping to accomplish with this guide
was just to give you a starting point.

 LAURA:    That is our disclaimer.  We would like to turn it back to
Kristy to see if there are questions at this time.

 KRISTY:   Thank you and I would also like to remind people that they
can E-mail their questions, especially if they are on the Web cast to Web
cast@ilru.org.  And as a matter of fact we just got one in.  It says during
the telecast it was mentioned that Medicaid does not pay for
environmental modifications.  While this is generally true, what about the
home and community-based waivers?  It is my understanding that for
people who qualify for these waivers, that some states cover the cost of
home modifications and/or environmental modifications.  Is this your
understanding as well?  I think the importance of these waivers cannot be
under stated as states move forward with the Olmstead planning.

 CINDI:    This is Cindi, and yes, that is true.  The Medicaid waivers have
installed roll in showers in Wisconsin.  They have built ramps, they have
widened doorways, they have provided an enormous resource for people
who need to modify their environment and I agree, they are absolutely
invaluable.

Currently, in our state, we are looking at waits of two to seven years to get
a Medicaid waiver.  So if the person is not actively on one right now, they
are a future resource, but not a current one.

 KRISTY:   Michelle, do we have any questions?

 OPERATOR:  If you have a question at this time, you may press the 01
on your telephone.  Yes, we do have a question from Sandra.  Go ahead,
please.

 CALLER:    We did not get the handout that you keep referring to.  Will
we get that with our copy of this presentation?

 KRISTY:   You will.  I spoke with someone in your office and it was
mailed to you, but apparently you guys are moving, and I would be
happen toy send you a new one.

 CALLER:    We have moved to 2726 --

 KRISTY:  If you could give me a call after the teleconference, that would
be great.

 CALLER:    Good deal.

 OPERATOR:  The next question comes from Bonnie Todd.  Go ahead,
ma'am.

 CALLER:    One of our consumers is asking I need a van with a ramp,
how do I get one?

 Most funding sources will not pay for the vehicle, and I say that with just
a caveat that if a van is necessary versus a car, sometimes the funding
source will pick up the difference between the van and the car, and
sometimes if the funding source is in a rural area, they will recognize that
there are no other resources, so it might be negotiable, but most of the
time the funding source does not pay for the van itself.


If the individual will be working, DVR or vocational rehabilitation might
pay for the modifications to the van.  If the individual is on a home and
community-based waiver, the waiver might.  If this is for a child,
sometimes the Medicaid waivers for children such as Katy Beckett will
pay.  If there is a family support program for children in your state that
can be used.  There are also automobile manufacturer rebates which will
defray the cost of modifications to a van, and that is on Page 39 of your
handout.  As well as there is information on vehicle modifications and
transportation Web sites on Page 47 and 48 of your handout.  And we also
included a list of assistive technology loan programs around the country. 
Many states now have specific assistive technology loan programs, which
can be used to assist with van payments.  Now, this is a loan, it's not a
grant, so they want their money back, but it is a nice way for people to
obtain very expensive pieces of equipment like a van.

 That is the Pennsylvania Assistive Technology Program.

 KRISTY:   Michelle, are there any other questions?

 OPERATOR:    No ma'am, there are no more questions at this time.

 KRISTY:   Okay, great.

 LAURA:    I am going to start kind of going through the process that I
used when I am meeting with an individual most often in their homes.  I
want to point out that the reason we included these two protocols or
processes is that each individual needs to find what's going to work for
them when they are going out and meeting with consumers about
technology or about independent living, but they both really pull us all
back to the same idea.  We are not here to give awe list of equipment or
things because that is ever changing, the goal is to come up with the
concepts that are going to lead you to the answers that you need.


And what I am going to start out with is on Page 12 in your manual, and
these are some key factors.  These are the things that run through my head
when I walk in the door to an individual's home.  I generally deal with
people -- work with people that are deaf or hard of hearing or have vision
loss, and for the most part, they are senior citizens.  I consider a good day
when I get to talk with someone that is under age of 75.  By the way, I can
work with all ages.
The first thing that will come to mind usually is someone who is going to
share with me, you know, what is their disability and what's the cause of
that disability?  That goes along with the age of onset.  Someone with a
hearing loss, for example, that they've acquired due to environmental
noise and have obtained that later in life as opposed to someone that was
raised with their hearing loss are going to bring different issues and
different questions to me.
And then I also like to ask and view what their functioning level is.  I
know this sounds medical, but it's really not.  These are things you gain
from sitting down and talking with someone one on one, and these aren't
questions I say what is your functioning level?  Where do they view things
in their life?  I might get a referral from someone, for example, as I
mentioned earlier that they are relative, they want them fixed, they want to
hear well on the phone.  And I get out there and I talk to Joe who indicates
to me that he is doing just fine, and I really do not need to come in there
and fix him.  And sometimes the relative does not like to hear that, but it
is what the consumer goals are and what their thoughts are.
We need to take a look at whether the issue that they have are progressive,
are they stable or are they fluctuating?  Someone with MS for example
may have good days and bad days.  I worked with a lady who was
employed full time with a significant hearing loss.  She did not know day
to day what her hearing level was going to be when she walked into her
office.  It might be a good day and she can hear on the phone, it might not
be.  So those are the things to address because that can really wear down
someone's tolerance for working or going to school if they aren't sure
where they are going to be at day to day.

We take a look at hearing and visual abilities.  That is going to affect how
they are interacting with technology and their environment. We look at the
presence of other disabilities, and their mode of communication. 
Someone may be a great speech reader and someone may not be.  So you
need to figure out how are you going to communicate what your services
are and what the technology is in a way that makes sense to them?

We look at speech abilities.  We look at educational levels, and this does
not mean that someone with a Ph.D. is going to handle technology better
than someone with an 8th grade school level. In fact, often it's the
opposite.  I worked with a gentleman who was very highly educated and
wanted me to know that and he was pretty embarrassed two weeks later
when he called me up because he'd actually turned the loud ringer off and
couldn't figure out how to get it back on.  So education is -- can be a
factor.

Employment is another thing.  Is this person going to want to tackle new
technology after they have been working all day and are fatigued?  Are
they going to need technology in their workplace? I am currently working
with a gentleman with ALS who we are trying to find out what's the best
computer technology that is going to meet his needs both at home and at
work because he is still fully employed.

And then we check out the natural supports. Is everybody in the home,
you know, gung ho and ready to tackle and improve consumer's goals or
are they placing barriers in front of the individual? For example, someone
that I worked with who lost all of his vision and had a mild brain injury
due to a bike accident and went out into the home to meet with them.  This
person has no residual vision, and the wife continually put out things
around the house.  She would leave shoes in the middle of the floor.  She
would rearrange furniture.  So that was preventing a significant barrier for
him to become oriented to his home again.  So natural supports or natural
not supports. Cindi.

 CINDI:    I have another comment on that, again, on the caregiver issue is
if the natural support a spouse, child or a parent, they may have other
people in their life that they are also care giving for.  Just because there is
a natural support there it does not mean that you have unlimited access or
ability to use that support.

I had a call from a school district that was having a lot of trouble with a
mom not following through on a therapy program for her child, and all
they knew was that she had one other child who didn't have a disability. 
They did not know that she was fostering her sister's two kids while her
sister was in rehab and also providing care for her disabled mother.  And
they did not know that she herself had a disability as well.  So sometimes
the natural support is not as useful as it may outwardly appear.

 LAURA:    Thank you. Cindi, that is a very good reminder.  I get referrals
from the school and teachers and I will even meet with a student in the
classroom with the teacher and we have these great ideas and then we
send information home and the parent may never contact us.  And I sit
there and think, if it were my child, I would be right there and I often
forget that concept.

 CINDI:    Sometimes you just do not know. One of the questions that I
ask whenever I am dealing with a natural support issue is there anything
else in your life that you are dealing with that would prevent you from
helping this person out?  Because that is a question that is often not asked
and usually when you leave the door open, you will get the answer.

 LAURA:    Great point.  The last factor that I always like to consider is
attitude.  Does this person want some change?  Does this person want to
try a piece of technology?  And I always refer back to the grown child
trying to force a hearing aid or an amplified phone on their parent. If this
person is afraid of technology, their afraid of their microwave or their
coffee maker and now you want to give them a TTY and they need to
learn how to type at age 80.  It might be a tough sell.  Attitude can bring a
lot or it can take a way a lot.

The next part I want to talk about are just some key questions or process
of elimination.  And I do have a couple of examples as I go through here,
and I am going to ask Cindi a question about caregivers.  The first one is
what pieces of equipment is the person using now and how are they
working for them?  So if what they have got is going okay and they do not
see a reason to change, I might provide information, but then it's up to
them to let plea know if they want to try something new.

What things have they tried in the past and what were their results?  My
favorite example is an individual that I was working with who is deaf and
has some cognitive disabilities, working through supported employment,
they made a referral for telephone communication for him, and he had
been through the voc rehab program years ago and I get out to the home
and we sit down and start talking about ideas for communication, he gets
off the couch and goes in the back room.  He brings back a TTY in the
box in the original shrink-wrapped plastic.  It had never been removed and
it was five years old.  They do not even make them that look like that
anymore.  This consumer was basically functionally illiterate.  He did not
know how to read and write, however, his VR had said you are deaf, and
here is your TTY.  So that was obviously something that had been tried in
the past but on was not successful.  It turns out he could benefit from a
very powerful amplified phone and could make calls.  He didn't need to
learn to type for that.

What modifications can be made to the existing environment or the
existing equipment?  And I am going to talk about some low-tech
solutions at the end of this and I have a handout in the book regarding that. 
It might be something as simple as putting a bump dot on the start button
on the micro wave or having them get a new micro wave that has the
minute button so they do not have to press a series of keys.  I know I like
the minute button on my microwave, one, two, three, minutes and it's
cooked and then we begin to talk with them and bring out actual devices
people can try.  And I always believe in starting with the low tech.  So
introduce something that is easy, fairly inexpensive, consumer friendly,
and then you move up to technology ladder as far as complication, as you
need to.

And once you do introduce the technology solutions is how much training
or time does this person -- is it going to require for them to learn to use the
piece of technology.  Voice recognition software, that can be real quick
for some people or it can take a very long time for others.  Go ahead,
Cindi.

 CINDI:    Just one thing about training and it's a very relevant one, is that
quite often funding sources will pay for equipment but really do not
consider training to be an issue.  There is an assumption that if it comes
with a manual the person can read the book.  So training is an important
issue and it needs to be built into whatever funding requests you are
making.

 LAURA:    The next thing that goes right with what Cindi said, how are
the funding issues going to be met?  And that is what I will be leading
into.  It's a good idea to kind of address those at the same time that you are
introducing technology.  It would be like someone giving me the keys to a
jaguar and say here you go, go ahead and drive it around for an hour, but
bring it back because you will never be able to pay for it.  That is how I
operate in my life and that is how I want consumers to have the right to
know up front what we are talking about as far as costs and technology
and options available.  They should be given all the information that they
need to make that decision.


And then how will ongoing training, upgrades or repair issues be met?  Is
this technology going to be obsolete in a year?  Is it going to need
upgrades in a year and do they know how to install them on a computer,
for example?  Are they going to call you in a year because something
broke and are you going to be a resource for them or not?  Is it something
as simple as explaining how to get a replacement battery in a cordless
phone, or are you going to take on the wiring project in that house? That is
a decision that you work out with them.

And then the last one that I wanted to add in here is trainer patience or IL
worker patience. That is a big key in working with an individual on
technology.  Is the person introducing the technology or training them on
it, are they familiar enough with the equipment and comfortable with the
equipment?  And are they comfortable working with that person with a
disability?  Has there been a rapport developed?  Are they familiar with all
of the factors?  All of us know what it's like to take a test with someone
looking over your shoulder and you are nervous, you are less flexible and
your ability to learn things can be a barrier. So what's that rapport with the
trainer?
Next I want to flip over the page 27 in your handout.  I am going to
address some funding issues and I always have my disclaimer that this is
not a complete list.  In fact, every time I present it, I put new things on
here.  These are just ideas and resources and Cindi has provided many of
the hard Web site phone number resources in the back of the your manual. 
Pair just starting at the top and moving down, obviously vocational rehab
programs can be tapped into if it's an employment related piece of
technology.  Every state has a program for deaf, hard of hearing or vision
loss.  There may be funding available depending on the state.  For
example, your county human services department, your area agencies on
aging.  One big one is work incentives and identifying whether the
technology is going to fit in with a social security work incentive.
Employers have obligations to provide reasonable accommodations.  I
work with some folks who choose to bring their own technology to work. 
That way they know it works for them and they have it if they leave and
find another job, but we talk about the fact that it's okay to ask your
employer for the amplified phone for your job.

You have your school districts and universities.  But they have laws they
must follow to provide technology.  I put independent living centers on
here, primarily because it also fits with disability-related organizations. 
Some independent living centers do have funding available, just
depending on grants they may have written.  And that varies from center
to center and state to state.

The next option, at least we use in our state, is our local service clubs or
men's animal club. That means the lions, the moose, the elk and I
apologize if other areas of the country do not have lion's and moose and
elk.

 CINDI:    One caveat with the men's animal groups is that service clubs
often target a specific disability or a specific group of people that they
prefer to serve.  For instance, the lion's prefer to serve people with hearing
and vision loss.  So it's real helpful if you know what their target is and if
you are not sure, just call and ask.

 Each state has telephone equipment purchase programs that are available. 
Funding comes from the phone companies and the universal service fund.
So that is not -- I use that funding quite a bit to handle the communication
barrier that is people have.  A local church is an option.  Occasionally
someone needs a home modification and they can secure funding for the
materials.  Their church seniors will build it for them, their volunteers.
Cindi has included a list of each state's assistive technology loan contact
information, and then just the last one I put on here that could be the first
is personal and/or family resources.  We talk about, you know, consumer
empowerment and sometimes people do need to make a personal
investment into that funding.


And one thing I did forget on the last page that I talked about the key
questions, the last two questions at the bottom of that page is really what it
all boils down to.  Is what does the consumer want?  And what does the
consumer think is needed?  Do you want to address that?

 CINDI:    There is one additional handout that has been included and it's
back to Laura's funding page.  Most people fail to realize that adaptive
equipment might be tax deductible.  The I. R. S. changes their list of what
is tax deductible every year and you do need to check with that, but I
believe its I. R. S. form 802 I think.  That is the form that people can use
for medical expense deductions.  Assistive technology ongoing payments
may also be taken as a rent adjustment for subsidized housing providers. 
Ongoing payments for medical equipment, so if you take out a loan to
fund your -- like this lady called who called before, if she takes out a loan
to fund her van and is making payments of $100 a month, that $100 a
month times 12, $1,200 a year can be used as a medical expense for the
purpose of adjusting subsidized rent calculations.  So those are two other
resources that people often forget to use.

 Thank you.  The next handout I want to talk about is on Page 13.  And
keeping in mind that I work in a rural area serving ten counties, working
with a lot of old homes, older folks, I have kind of developed a kit that I
keep in my car and it's pretty much everything I could need if there is not
hardware store within ten miles.  I originally called it a McGuyver kit, but
I thought I would be sued by Hollywood so I renamed it to the Fix It Kit. 
These are standard things you will find in any Wal-Mart or Home Depot. 
Spend in time there walking through sometime and you are going to be
amazed at the things you can find to help work with technology in the
home.

The first is a telephone Y. Jack and a telephone adapter.  Some people
may not even be aware that there used to be old four prong phones and
that is how they plugged into the wall.  There are still homes that have
that.  So being ready to plug in that amplified phone for someone, no
matter what kind of jack they have in their house.  Three prong electrical
adapters -- most phones that are older may not have three prongs.  You
can always use extension cords or power strips to keep electricity safe. 
That is another thing you can look at when you are trying out technology,
are you plugging in four different items into one outlet in wiring that is
from 1920?  So talking with the consumer about electrical safety can be a
very important independent living skill.  You can always use duct tape to
fasten things down.  I also have on here multiple colors of tape.  I use tape
to mark anything from microwaves for vision loss to remote controls to
telephones, to laundry, stoves, I will work with someone who got the great
new T. V. with this 200 button remote from their grand kids for
Christmas.  All they need are channel up and channel down and volume
up and down.  We cover everything else up with tape so they are not going
to hit the wrong button and call their grand kid at ten o'clock at night
because they messed up their T. V.
We look at having phone cords, long ones, short ones, whatever you are
going to need.  The electrical outlet in a home may not be anywhere near
the phone Jack.  So you have got to get the two together.  Velcro --
multiple colors if you can, black, white, red, blue, and polylock, which is a
plastic interlock.  I use Velcro to mark items for vision loss.  One exam is
bottles of shampoo and conditioner.  I had a lady who was very particular
about the type of shampoo and conditioner she had in her shower and
what she used.  With her vision loss, she could not tell the difference.  She
didn't want to change brands so the bottle would feel different.  So we
took the two different textures of Velcro, put a piece on each bottle,
shampoo and conditioner, now she can feel the difference.

I have used anything from cotton balls to sandpaper, any kind of texture
that I can think of in order to mark different buttons on a phone for speed
dialing.

I actually learned the sandpaper from a consumer who had an old phone
and I went out and she had every grit -- 100 grits, 60 grits to mark the
different buttons on her phone for her.  White address labels so you can
write on them and you are not going to mark anything up.  I bring out a
signature guide so someone can feel comfortable signing a release of
information.  I bring out phones that we keep in stock and the phone goes
around pens, silverware, toothbrushes, so they can hang on to better.

Bump dots are a device you can buy through max I AIDS; that is in the
equipment listing and those come in different sizes and colors so you can
mark the microwave or anything else that the home might need.

Shelf liner or scoot guard is a wonderful tool.  It can go underneath a plate
to keep it from sliding out.  It can go underneath a seat cushion to keep
someone from sliding off of his or her kitchen stool.  Scissors and zip ties
to fasten things down so people will not trip over them.  That is after you
duct tape them to the floor.  I keep a multi tool with me, something like a
leatherman.  I had to pry an old phone off a wall once and it was fastened
down quite well.

Extra batteries, screwdriver, I see I have string on there twice.  I must
have thought that was important.  And a good Sharpie pen or any pen of
good color, so if you are marking on the speed dial phones, might write all
the kids in red and the doctors in blue.  Mix it up a little bit.  The other
thing with programming speed dial is work with the person to pick the
order of those numbers. Sometimes we put all the kids on one side in birth
order, or we put all the male kids on one side and female kids and those
are not tools that are not specialized.  You can find them anywhere and it
can mean the difference between someone doing something on their own
in their house.

 KRISTY:   Are there any questions?  I actually have two questions from
Springfield, Missouri.  I will start with the first one.  She E-mailed in I
have heard from a rehab agency that they can do a computer assessment
that is paid by Medicaid.  Missouri has a program that pays for adaptations
to computers and this assessment would be essentially for this program. 
Do you know what qualifications you need to have for Medicaid to pay an
assessment?  Is this due to the possibility of a need for AAC that Medicaid
is paying?

 Medicaid will pay for augmentive communication evaluations.  They will
pay for the software for a computer to be used as a communication device. 
So there has to be an augmentive communication component unless you
are using one of the waivers.

 Community options program in our state will actually pay the computer
as well.

 KRISTY:   The second question, also on your handouts you show that
Medicaid and sometimes Medicare and insurance pays for some items that
I was not aware of.  Those items that I noticed were grooming tools,
researchers low tech AIDS, low vision aids, hygiene devices and grab
bars.  Is this in relation to Medicaid in Wisconsin only?

 Because each state is allowed to determine what it will pay for under
Medicaid, my handout was developed for the state of Wisconsin.  So with
Medicaid, yes, you do want to check with your individual state and see if
they do have that.  And reachers, yes, it will pay for.  Sometimes it will
pay for equipment that is provided in an occupational therapy setting so it
may pay for along handled brush if an OT in a hospital, but provides it not
by somebody in the community.

 And added to that is even if it is covered by Medicaid, a reacher, for
example, with the appropriation authorization, sometimes it's difficult to
find a DME dealer that will accept assignment on that because it will not
cover his or her costs.

 Yes.

 KRISTY:   Okay, Michelle, do we have any questions?

 OPERATOR:    Yes, ma'am, we do.  The first question comes from
Kathy.  Go ahead, ma'am.

 CALLER:    Yes, Hi, this is Kathy from Sacramento.  I am with the AT
network.  I wanted to comment on a couple of things.  You talked earlier
about modifications that could be made to an AT and along the same lines
I would say that AT can be upgraded, like for example, my FM system
that I use for meetings has an upgrade that has come out for cochlear
implants.  So AT can be upgraded.

 Yes, it can.  And most of the time the first upgrade is free.  Sometimes the
second upgrade is free.  After that, there is usually a charge.  And when
it's computer related upgrades, about every third or fourth you need to buy
a whole new computer and a different operating system.  So it can be a
double-edged sword sometimes.  And along with that quite frequently I
run into individuals who call me a couple of years later when things have
changed.  They are anticipating the change in technology and they want to
know, okay, what's out there now and is that going to be any different than
what I have now?  So thank you for pointing that out.

 CALLER:    Yes, and I also just wanted to add briefly that you can also
have your AT covered under your homeowners insurance policy
sometimes. Like if your AT becomes stolen, your insurance will cover it. 
I did that with my scooter that I have at home.

 And also renter's insurance.

 Yes, thank you.

 KRISTY:   Michelle, are there any other questions?

 OPERATOR:    No ma'am, none at this time.

 All right, Kristy, I think it's time for your wrap up if there are no other
questions.

 KRISTY:   Excellent.  Thank you for your excellent questions you raised. 
I want to remind you to please complete the evaluation forms that were
included in your packet.  They are very important to us.  You can fax
them, E-mail them or mail them in to the NCIL office.  I would also like
to thank Laura and Cindi for their time and their huge effort to make this
teleconference a success.  That is all for now and bye.  Cindi and Laura,
could you please stay on the line?