Dear Keith:

I am printing out your valued post to read but in advance did click on the
custom clothing link. I do not really have a basis of comparison and will
be interested in comments, but the adaptive clothing including Velcro and a
bunch of helpful types of socks, for example, seem quite fairly priced to
me. Again, interested in comments.

Also, I thought I'd provide 2 links below because the link in your email
arrives at a statement of transferred web pages. The first is the main page
for Professional Fit Clothing, and the second goes to the products.

Thanks so much from all of us, and sending best wishes from a rain refreshed
NY village ...

:) LindaMF.
--- check out links: ------
http://www.professionalfit.com/%7Eprofit/index.php

http://www.professionalfit.com/%profit/about.php
----------
Individual e-post from:
Dr. L. D. Misek-Falkoff, Speaker, and Chronic Pain Caucus Chair of
The National Disability Party http://www.disabilityparty.com . bio (about)
http://www.yahoogroups.com/group/pain-in-the-law
http://www.yahoogroups.com/group/litigation-stress-central
http://www.yahoogroups.com/group/ChronicPainCooperate
http://www.yahoogroups.com/group/poems-of-pain-and-promise
http://www.cavalcade-for-freedom-car.org
http://www.yahoogroups.com/group/CYBERLIBEL-and-EMAIL
http://www.yahoogroups.com/group/dismissed-as-disabled
----- Original Message -----
From: <dac4va@...>
To: <undisclosed-recipients:>
Sent: Thursday, June 13, 2002 1:25 PM
Subject: [DisabilityParty] DAC Notes - Comments Due On PMA - DAC'S Letter on
PMA - NH's - more->


========================================================
DAC Notes Thursday, June 13, 2002
========================================================
All right all you folks wanting to receive a higher PMA (Personal
Maintenance
Allowance) for Medicaid Waivers it's time to act today with your comments.
If you want a change you've GOT to SPEAK OUT or you'll just receive the same
old status quo. Please read the 1st letter and see what Maureen has to say
and then get your faxes and emails flying! I'll post my letter (2nd)
following Maureen's if you need to copy the questions or use the information
I have. The 3rd letter is the original questionnaire if you'd like to
respond to it. Do it today!

Here is a site worth checking out with Clothing for people with
disabilities.
Please take a look at the website and consider using it as a clothing
resource.
<A HREF="http://www.professionalfit.com/">www.professionalfit.com</A>
800-422-2348 <A
HREF="mailto:kurt@...">kurt@...</A>

Then read Steve Gold's info along with John Williams. Here it all is so
read, ACT, enjoy and comment if you wish:)

Keith-

========================================================
1. COMMENTS DUE FRIDAY ON PERSONAL MAINTENANCE ALLOWANCE
2. DAC'S LETTER ABOUT THE MEDICAID PMA
3. QUESTIONS FOR PMA
4. NURSING HOMES RULE LONG TERM CARE
5. COLUMNS BY JOHN WILLIAMS
6. FIRSTGOV NEWS & LINKS
========================================================
********************************************************
COMMENTS DUE FRIDAY ON PERSONAL MAINTENANCE ALLOWANCE
********************************************************
Hello,

The Joint Commission on Health Care (JCHC) is studying the personal
maintenance allowance for Virginia's Medicaid waivers. The allowance
determines how much, if any, a person will have to co-pay for their waiver
services. This has already been described by Keith in earlier messages
posted on VaWaivers-L.

The JCHC had received 13 comments as of yesterday. Yikes! That's not many
comments.

Comments must be received at the Commission by Friday at 5pm. No time for
mail. Comments can be sent by FAX or E-MAIL to:
Kim Snead
Executive Director
Joint Commission on Health Care
Suite 115
1001 East Broad Street
Richmond, VA 23219

FAX 804-786-5538
ksnead@...

Letters that describe the risk of institutionalization you are facing
because
of the lack of money to meet your needs in the community would be very
helpful.

Letters that explain the circumstances that have led someone to be
institutionalized because of the co-pay would also be good.

Thanks,
Maureen Hollowell
Endependence Center
Norfolk

********************************************************
DACS LETTER ABOUT THE MEDICAID PMA
********************************************************
D A C
Disabled Action Committee
14405 Artery Ln#11 ~ Dale City, VA 22193 ~ U.S.
Phone 703-878-1737 ~ Email DAC4VA@...

June 6, 2002

JCHC
1101 E. Broad Street,
Suite 115, Richmond, VA 23219

To The Joint Commission on Health Care Members:

On May 30th, The Joint Commission on Health Care (JCHC) received the report
on the personal maintenance allowance (PMA) in the Medicaid Elderly &
Disabled Waiver program. As you know, the personal maintenance allowance in
Virginia is 100% of SSI, or $545 per month. The Study showed that in 1998,
31
states had higher allowances. 14 states have a personal maintenance
allowance
of 300% of SSI which is the level we are seeking as stakeholders of Virginia
I
’ve been personally battling this unfair PMA for the E&D Waiver recipients
for the past 9 years even
challenging DMAS about the methodology used thus winning a case precedent in
the Circuit Court of VA. (see Smith & DMAS vs Kessler) No where in this
country can a person subside on only $545 mo let alone in Virginia.

The Study you received also includes anecdotal cases of individuals who
were/are unable to support themselves on the personal maintenance allowance
(pp. 12-13). The report also includes information showing the cost of
living
for one person in various parts of the state. The estimates range from $1154
to $1914 per month. This report documents that nursing home costs exceed E &
D Waiver costs by about
$8000 per individual per year. (a point I’ve been trying to get across for
years)

Although the cost of raising the PMA to higher levels up to 300% of SSI for
all of the waivers is estimated to cost a total of $5.1 million which about
1/2 would be state funds, the long term and short term savings would be
immediate and cost effective throughout many state agencies. This would in
effect nullify any direct costs to the state.

Take for instance the following information that will help explain how cost
effective an increase in PMA would be.

page 2

By raising the PMA to 300% of SSI this will PROMOTE SIMPLICITY in the entire
program. Currently, providers of care must bill their patients for the
required co-payment (i.e. income over the PMA). Patients are allowed to keep
income above $545 to pay for out of pocket medical expenses. However, the
process for getting this done is very cumbersome and time consuming for both
DSS, the provider and the consumer. Proof of bills, paperwork, and notices
are required EACH time there is a non-covered medical expense! By raising
the PMA, you eliminate the need for frequent adjustments to the PMA and all
the related paperwork - the consumer can simply keep up to $1635 of his own
income and use that income to cover all
living expenses, including out of pocket medical costs. This is a NO
BRAINIER for better efficiency and cost effectiveness among all the agencies
involved.

Again, raising the PMA to 300% of SSI IN ALL THE WAIVERS PROMOTES UNIFORMITY
between the various community based programs. Currently, there is a
confusing
array of different rules for different waivers. For example, the AIDS Waiver
already has a PMA set at 300% of SSI; the MR Waiver and CD PAS Waiver have
special rules and deductions for earned income, while the E & D Waiver does
not. All the people in these waivers are trying to remain in the
community --
they should be treated similarly. By using the same rules in all the
waivers,
the system would be far less complex and confusing for families, consumers
and Departments of Social Services.

This would also end the current discrimination against non-married persons
and against discriminating one disability against another. Currently, when
a
Waiver participant is married, the spouse is allowed A MINIMUM of $1493 per
month (effective 7/02) to meet her expenses. This amount can go as high as
$1940 if there are high shelter costs. Added to the Waiver participant's
$545
PMA, this married couple can keep almost $2500 per month to meet their
monthly expenses (and MORE if there are dependent children). There is no
justification for the huge disparity in treatment between single and married
waiver participants. While economies of scale actually favor the married
couple, in our current system the single person is
somehow expected to survive on a small fraction of the amount allowed
couples.

Finally, by raising the PMA to 300% of SSI is consistent with the
requirements of the Americans with Disabilities Act and the Olmstead
decision. In Olmstead the US Supreme court found that programs such as
Medicaid are required to serve disabled persons in the "most integrated
setting", unless doing so would require "fundamental alterations" in the
program. Community based case is clearly the most integrated
setting for people at risk of institutionalization. An adjustment to the PMA
to enable disabled people to use their own income to support themselves in
the community is a reasonable way to achieve both cost-effectiveness and the
goals of the ADA.

page 3

The low PMA has caused me numerous financial hardships not to mention it has
forced me to become a beggar of Food Stamps, HUD Rental Assistance, Fuel
Subsidy Assistance, and the inability to pay off charge card debts incurred
just to survive. All of this because I was forced to live on sub poverty
levels with a PMA which is now only $545 mo. Where is the logic and what is
the sense for reasonable people to expect that those with hardships already
can subside on such a paltry PMA?

So I ask on behalf of DAC and myself that you finally restore common sense
to
our healthcare world and increase the Personal Needs Allowance for all
Wavier
recipients to the Federally Mandated level of 300% of the SSI level. We
deserve the same quality of life as anyone else.

Thank you for your understanding and consideration on this issue.

Respectfully,

Keith Kessler

cc/dac readers
cc/media
cc/jwoods
cc/warner

********************************************************
QUESTIONS FOR PMA
********************************************************
As directed in the Budget Bill, the Joint Commission on Health Care (JCHC)
has begun its study on the personal needs allowance used in the Medicaid
Elderly and Disabled Waiver program.

Kim Sneed, the new JCHC Executive Director, plans to present her report at
the JCHC's May 30th meeting. We will have an opportunity to comment on the
report and recommendations after it's released. However, I'd also like to
help Kim gather stories/information to incorporate in the report itself.
So,
I need your help ASAP.

Please send to me any information / experiences / stories about the
following:

1. People who are on the E & D waiver, who are struggling to pay all their
living expenses (especially basic food, shelter, utilities) on the $545
personal needs allowance. (give details about living expenses) Particularly
sympathetic would be someone who got a higher PNA because they lived with
spouse or children and then spouse/child died or left and personal needs
allowance plummeted to only $545.

2. People who qualified for the E & D waiver who turned it down or ended up
in a nursing home anyway because they knew they could not afford their
living
expenses with only $545 per month. (include any details you have about the
costs of nursing home care, or the deterioration in health due to foregoing
waiver services)

3. How do pre-admission screeners handle this problem? In the past, I
heard
about screeners who simply didn't offer people community based services,
because they knew the individual couldn't manage on only $545 /mo. Those
folks go to nursing homes (at higher cost) without even knowing about
options.

4. The complexities of getting DSS to adjust the personal needs allowance
when people have allowable expenses for non-covered services. For example -
do people even know they are allowed to keep their income for non-covered
services? Do people just end up paying their own dental bill because it's
too hard to get the paper work straight with DSS? Or do they not get those
services?

5. DMAS just eliminated the earned income allowance for people on the E & D
waiver. (MR waiver recipients and consumer directed folks get a generous
disregard of wages up to 300% of SSI. I know of no explanation for this
disparity.) Has this hurt anyone?

6. Any other data about housing costs / access to community based services
etc.

7. Anything else you think is pertinent.

DMAS has suggested to me that they would like to allow all waiver
participants to keep all their income (up to 300% SSI) but of course there's
a cost impact to do this. (they say about $2.5 million in state funds, which
isn't too terrible.) But we absolutely have to persuade the legislators
that
this is an area that deserves additional funding. They also need to
understand that this problem is statewide - not just in high-priced Northern
Virginia.

Thank you for your help! Call me if you have any questions.

Jill A. Hanken
Staff Attorney
Virginia Poverty Law Center
201 W. Broad St. Suite 302
Richmond, VA 23220
804-782-9430
fax 804-649-3746
jill@...

********************************************************
NURSING HOMES RULE LONG TERM CARE
********************************************************
Nursing homes rule long term care - Information Bulletin # 35

The 2001 Medicaid data is now available (www.medstat.org or
www.hcbs.org)
. Progress is slowly being made to reverse in the institutional bias in
Medicaid expenditures. However, we have a long way to go to end the
discrimination that results in warehousing people with disabilities.

This Information Bulletin presents one aspect of the institutional
bias –
Medicaid funds expended per state to keep people institutionalized in
nursing
homes COMPARED TO Medicaid funds expended to keep persons in the community
and in their own homes.

In order fairly to compare nursing home expenditures with the community,
we have added the Medicaid's Personal Care option (see Information Bulletin
#
8, www.stevegoldada.com), Medicaid's Home Health (see Information Bulletin
#10) , and the Medicaid's Waivers for Aged, Aged/Disabled, and Physically
Disabled which are intended to offer persons a community option instead of
nursing homes.

Under the Medicaid statute, before persons go into a nursing home, they
MUST be offered the "choice" of living in their own homes WITH APPROPRIATE
SERVICES (e.g., services provided in the Personal Care option, or one of the
Waivers, and any necessary home health care). If your state has been
complying with the law, people with disabilities should be told about the
community based services and given the option to stay in their own homes
before entering into a nursing home.

WHAT ADVOCATES COULD DO:

1. Organize to require your State's Medicaid nursing homes funds
to "follow the person." If the nursing home funds were available to the
person, then each person could exercise a meaningful choice between the
nursing home and the community.

2. Ask your state to put a moratorium on nursing homes until your
state achieved a real parity with community services.

3. Share the disparity with the press. They really do not know what
a
big for-profit business the nursing home industry is.

Here are the numbers for 2001: the amount of Medicaid funds for nursing
homes COMPARED TO the total amount spent on both Medicaid's Personal Care
option, Home Health and the three Waivers that are supposed to avoid
unnecessary segregation in nursing homes.

STATE 2001 MEDICAID EXPENDITURES:
Alabama.......($673 m for nursing homes - $ 87 m for the community)
Alaska..........($ 71 m for nursing homes - $32 m for the community)
Arizona..........($12 m for nursing homes - $2.5 m for the community)
Arkansas.......($369 m for nursing homes - $134 m for the community)
California ($2,598 m for nursing homes -$1,612 m for the community)

Colorado ($359 m - $148m)
Connecticut ($1,024 m - $224 m)
Delaware ($110 m - $15 m)
D. C. ($158 m - $16 m)
Florida ($1,702 m - $209 m)
Georgia ($760 m - $138 m)
Hawaii ($148 m -$ 25 m)
Idaho ($118 - $50 m)
Illinois ($1,499 m - $175 m)
Indiana ($817 m - $70m)
Iowa ($373 m - $64m)
Kansas ($479 m -$145m)
Kentucky ($565 m - $189 m)
Louisiana ($1,158 m - $33 m)
Maine ($201 m - $35 m)
Maryland ($696 m - $99 m)
Massachus ($1,423 m - $98 m)
Michigan ($1,743m - $197 m)
Minnesota ($901m - $267 m)
Mississippi ($415m - $36 m)
Missouri ($1,040m - $231 m)
Montana ($111m - $46 m )
Nebraska ($369m - $56 m)
Nevada ($92m - $24 m)
New Hampshire ($209m - $20m)
New Jersey ($2,193m - $322 m)
New Mexico ($165m - $88 m)
New York ($6,392m - $2,863 m)
North Carolina ($876 m - $508 m )
North Dakota ($151m - $8m)
Ohio ($2,313m - $208m)
Oklahoma ($426m - $76 m)
Oregon ($542m - $256 m)
Pennsylvania ($3,684m - $1,558 m)
Rhode Island ($244m - $23 m)
South Carolina ($373m - $114 m)
South Dakota ($155m - $7 m)
Tennessee ($784m - $4 m)
Texas ($1,604m - $ 670 m)
Utah ($92 m - $8 m)
Vermont ($84m - $27 m)
Virginia ($528m -$92 m)
Washington ($614m - $454 m)
West Virginia ($293m - $86 m)
Wisconsin ($960m -$338 m)
Wyoming ($39 m - 5)

Steve Gold, The Disability Odyssey continues

Back issues of other Information Bulletins are available online at
http://www.stevegoldada.com
with a searchable Archive at this site.

Data supplied by The MEDSTAT Group from HCFA 64, Office of State Agency
Financial Management.

********************************************************
COLUMNS BY JOHN WILLIAMS
********************************************************
Good Day,

What is Vocie Mate? Who benefits from it?

Has Microsoft improved its accessibility features on its XP?

Are you interested in knowing more about assistive technology
and its benefits to people with disabilities? Microsoft has published a book
on assistive technology. What do I think of it?

Do you know that Hampshire College in Amherst, MA has an
assistive techology development center? Is it successful?

Learn the answers to the questions above buy visiting NOD.ORG
and
reading my last three columns. I appreciate your comments.

John Williams

********************************************************
FIRSTGOV NEWS & LINKS
********************************************************
Dear FirstGov Subscriber,

In this issue we are showcasing one page, our Citizen Gateway.
http://firstgov.gov/Citizen/Citizen_Gateway.shtml

Wow! Just look at what we added to this page today.

IN THE NEWS
· Hurricane Watch and Safety
· Local Farmers Markets
· Census 2000 ? check out your neighborhood.
· Avoid Spam e-Mail
· Avoid Scholarship Scams
· Student Financial Aid

JUNE IS NATIONAL HOMEOWNERSHIP MONTH
· Homes for Sale by the Government
· Federal Mortgage Programs
· Mortgage Calculator
· Know Your Rights - Fair Housing
· Moving Guide
· Home Improvement Tools
· Home Energy Saver
· Housing and Home Maintenance Publications

And more!!

SHARE THIS INFORMATION WITH OTHERS

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===============================
Comments and news of interest are always welcome. Feel free to use the
information in these newsletters however you want and if you want to credit
DAC,
do so only if you desire. To subscribe (please enter state) or unsubscribe
just hit reply with your wish. Thank you.

Keith Kessler - Founder of DAC (disabled Action committee)
14405 Artery Ln#11
Dale City, VA 22193
703-878-1737
Email: DAC4VA@...

http://members.aol.com/DAC4VA/main.htm <--for links etc.
DAC
http://members.aol.com/DAC4VA/index.html <--Mission Statement

**Some people grin and bear it. Others smile and change it.**







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