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work . . . and never did! -T. Harv Eker |
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jp@pabia.org |
Hi Folks,
Sometimes I have difficulty putting this newsletter together. I have many
demands on my time. This one made it out on a wing and a prayer. Please
forgive any typographical errors which might have made it past my watchful
eye.
John
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"Honesty is the first chapter in the book of
wisdom"
-Thomas Jefferson |
Henry Claypool of the Item Coalition
hclaypool@halftheplanet.org
During CMS's March 31, 2004 "Open Door Forum on the Medicare Power Mobility
Benefit," an astonishing 657 people attempted to participate via conference
call. However, as the forum abruptly wrapped up that afternoon, not one of
those 657 callers had been given the opportunity to speak, practically
eliminating the consumer's voice from this "open" discussion. Furthermore,
CMS has continued to hold these forums in Baltimore, an inconvenient
location for any Washington-based advocate, but especially for those
advocates with disabilities. We need to let CMS know that the Medicare power
mobility benefit effects more than the manufacturers and that everyone
deserves a voice in this debate about independence! As we continue to fight
for better access to wheelchairs through the Medicare
program we need you to take action. Please see the message below.
HELP US GET WASHINGTON TO FIX MEDICARE REGULATIONS ON
WHEELCHAIRS, SCOOTERS, AND SIMILAR DEVICES!
In December, 2003, as part of a new initiative to fight fraud in the
Medicare wheelchair benefit, the Centers for Medicare and Medicaid Services
(CMS) issued a "Policy Clarification" that severely limited access to
wheelchairs and other mobility devices. After months of fighting by
individuals like you and organizations like the ITEM Coalition, the Policy
Clarification was retracted in March, 2004.
HOWEVER, THE FIGHT IS NOT FINISHED. Current Medicare regulations provide
access to a mobility device only if needed for use in the four walls of a
beneficiary's home and not if he or she needs it to fully participate in
work, school, and the community outside of the home. The
regulations also only cover mobility devices for those beneficiaries who are
"bed or chair confined," and not for those who can get out of bed but have
limited mobility without a wheelchair, scooter or similar device.
We, with your help, are working to maintain momentum on this issue to ensure
that Medicare's overly restrictive regulations are fixed. PLEASE VISIT THE
ITEM COALITION
WEBSITE AT
http://www.itemcoalition.org/takeaction.html TO TAKE ACTION ON THIS
ISSUE. On this website, you can tell key policymakers to fix the Medicare
regulations so that
Americans with Medicare can have access to mobility devices they need to be
healthy, independent and functional.
Thank you.
Henry Claypool
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"Wisdom is supreme; therefore make a full effort to get wisdom. Esteem
her and she will exalt your; embrace her and she will honor you."
-Proverbs
4:7-8 |
New Peer Focus Group Meeting Brief
Monday, April 5,
2004
Well, the Brain
Trust support group development committee is at it again. This time with
the help of Mike and Marilyn Peters. We met with Mike and Marilyn in the
social hall of St. John's Lutheran Church, in Swissvale, PA. Monday, April
5, 2004 to discuss their desire to get a group started there.
We shared the
various support group development tools with them and talked about the need for
peer-to-peer discussion groups.
The next meeting of
this group will be held Monday, May 3, 2004 at 7 p.m. Anyone interested in
attending can contact John Pistorius at
jp@pabia.org or 412.481.0443 for more information.
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Table of Contents
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"A great memory
is never made synonymous with wisdom, any more than a dictionary would
be called a treatise."
-John Henry Cardinal Newman
|
PABIA
Meeting Brief
April 6, 2004
Sixteen people attended the meeting this evening. Instead of the usual
routine of Speaker/presentation we opted for a peer-to-peer support format.
Ed Crinnion started the meeting with a brief video presentation and then the
discussion became lively.
One topic covered was recent PA SILC hearings with Paul Damon, Malin
Lowenadler-Shadel and John Pistorius all sharing their experiences. Others
included advocacy and the benefits of peer support. Several members
expressed the benefits they have personally received from their involvement.
Rich Wagner suggested that we start a public awareness campaign to inform
people about brain injury and peer support groups. He agreed to get the
campaign going once he receives the Facts Brochure template on disc from
John Pistorius. We'll keep you posted on future developments.
The next Pittsburgh meeting is scheduled for Tuesday, May 4, 2004.
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"Wisdom stands at the turn in the road and calls upon us publicly, but
we consider it false and despise its adherents."
-Kahlil Gibran |
DREDF Update on IDEA
Reauthorization
From the
Disability Rights Education & Defense Fund
reserveidea@dredf.org
News Briefing #33 April 1, 2004
TO JOIN THE RRN: Visit www.dredf.org and
complete our online subscription form. Earlier Briefings can also be found
on our website: www.dredf.org. We now
have nearly 4000 subscribers.
SCHEDULE FOR SENATE BILL 1248: The bill could come to the Senate floor at
any time; the latest dates under discussion are April 7 or April 8. If the
bill passes the Senate, it
will go to conference where it will have to be reconciled with the House
bill, H 1350.
DREDF ACTIVITIES: DREDF has been actively involved in advocating for
children and their parents in the Senate reauthorization process. We
continue to press for improvements as the process goes forward. We have
also joined the efforts of the Consortium for Citizens with
Disabilities (CCD). CCD's Education Task Force is comprised of over 50 of
the over 100 organizations that make up the CCD coalition, including DREDF.
The Education Task Force
prepared a number of letters and documents that were delivered to Senators
in Hill visits. DREDF signed on to these statements, which reflect the
views the RRN has been espousing since April 2002.
KEY MESSAGES ABOUT S. 1248: DREDF believes S. 1248 makes several
improvements to IDEA that will result in students with disabilities meeting
higher standards and achieving
greater educational results. These provisions include:
* POSITIVE BEHAVIOR SUPPORTS: The bill takes pro-active steps so that
students receive the supports they need to manage their behavior. The bill
also provides funding to schools to expand behavior supports and whole
school behavior interventions.
* ALTERNATE ASSESSMENTS: The bill successfully addresses the need for states
to increase research and development in the area of alternate assessments by
creating Section
662(b)(3).
* SCHOOL TO LIFE TRANSITION: The bill includes several provisions to
increase the success of special education students when they transition from
school to the rest of their lives. Specific requirements are added to the
Rehabilitation Act, and the bill strengthens the transition provisions of
the Individualized Education Plan (IEP).
* PERSONNEL: The bill applies the "highly qualified" provisions of No Child
Left Behind to special education teachers. It strengthens and expands
personnel preparation and personnel development authorities for both special
education personnel and general educators.
Despite these improvements, the bill contains several dangerous provisions
that weaken the rights of students with disabilities. These provisions
include:
* ELIMINATING SHORT-TERM OBJECTIVES: The bill removes short-term objectives
from a child's Individualized Education Plan (IEP) and replaces them with a
statement of the child's progress toward annual goals in the form of
quarterly reports. This change will make it more difficult for parents and
schools to measure student progress. Moreover, this provision may actually
increase the paperwork requirements of IDEA. The bill should require
instructional objectives in IEPs.
* LIMITATIONS ON DUE PROCESS PROTECTIONS: The bill limits due process
protections for students with disabilities. Specifically, the bill requires
parents to present due process claims at an "opportunity to cure" IEP
meeting that can be used to coerce parents into giving up their children's
due process rights (especially as parents' attorneys cannot be reimbursed
for participation in the meetings). This provision is unnecessary, because
current law already gives districts opportunities to resolve problems prior
to a due process hearing.
* The bill also establishes a STATUTE OF LIMITATIONS that limits the amount
of time parents have for filing a due process hearing request or for
appealing a due process decision. This provision will leave those children
who have experienced the most egregious and long-standing denials of FAPE
without a remedy. For example, 90 days (or less if the state so chooses)
for parents to file an action in court at the conclusion of administrative
proceedings is woefully insufficient for unrepresented parents. The Senate
bill also allows states to set their own statutes of limitations, and these
can be shorter than the limits provided in the bill.
* MONITORING AND ENFORCEMENT: Among the most important issues to parents
and disability advocates are the effective implementation and enforcement of
IDEA. While
the Senate bill makes some improvements in these areas, it leaves too many
major decisions to the U.S. Department of Education. For example, the bill
does not define what constitutes substantial non-compliance, nor does it
standardize specific benchmarks from state to state. The bill does not
include Part C in the monitoring and enforcement activities.
* RESEARCH ADMINISTRATION: The bill redirects the research function from the
Office of Special Education Programs to the Institute for Education Science
(IES). IES has no
track record in special education research. Moreover, this move increases
the disconnect between research and practice and seriously jeopardizes
research on the needs of children
with significant disabilities and low incidence disabilities.
* PERSONNEL STANDARDS: The "highly qualified" definition for special
education teachers needs clarification to ensure that all teachers new to
the profession are trained in state-approved special education preparation
programs. In addition, an appropriate definition of "highly qualified" for
related services personnel should be included in S. 1248.
* FUNDING: Parents and disability advocates support mandatory full funding
of IDEA. However, we oppose the provisions in S. 1248 that enable local
education agencies to funnel IDEA funds to non-IDEA activities when states
have never effectively met their obligations to students with
disabilities. It is past time for Congress to fund this law.
AMENDMENTS TO WATCH OUT FOR: Beware of amendments introduced on the Senate
floor. Two key issues not in the Senate bill as it was reported out of the
HELP Committee
will likely surface as floor amendments.
* Attorneys' Fees: The Senate bill does not currently cap the amount of fees
a court may award parents who prevail in due process proceedings nor does it
allow the State (which
is sometimes a defendant in these actions) to determine the rate that
parents' attorneys are paid, whereas the House bill contains these dangerous
provisions.
* Paperwork Waiver: The Senate bill does not currently include a pilot
program included in the House bill that would allow states to waive any IDEA
requirement that might result in a real or perceived paperwork burden.
ON PAPERWORK REDUCTION: We are sensitive to the burdens paperwork places on
teachers, but we urge great care in any effort to reduce paperwork;
essential rights and
protections for children must not be compromised. These rights and
protections include tracking school accountability for special education
service delivery, adequate documentation of student learning, and clear
communication between parents, teachers, and administrators
so that all concerned understand a child's needs, agree upon goals, and
agree to the means for achieving goals.
One way to reduce paperwork and streamline procedures is to computerize
Individual Education Plan (IEP) forms and standardize reporting and
accountability. Some states,
including New York ("IEP direct"-
www.iepdirect.com ) and South Carolina ("Excent"-
www.excent.com) are already using these
systems to assist teachers and school personnel to manage IEP development
and data recording. Any effort to reduce or waive existing requirements for
documentation and data collection must take into account:
* Effectively measuring and reporting EACH child's progress in order to
successfully implement an IEP
* Adequately documenting IEP team decisions to protect the student's right
to full access to educational experiences in the least restrictive
environment
* Requiring sufficient data to enable PARENTS and schools to track
educational outcomes for students with disabilities in a timely manner
# # #
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"It requires wisdom to understand
wisdom: the music is nothing if the audience is deaf."
-Walter
Lippman |
Medicaid Community Services and Attendant Services Act (MiCASSA) (S. 971)
Hearings to be held
Wednesday, April 7
The Senate Finance Committee will hold
hearings on the Medicaid Community Services and
Attendant Services Act (MiCASSA) (S. 971). This long awaited, much needed
step in the legislative process will come just two weeks after 400+ ADAPT
activists took over the Finance Committee hearing room in Congress to
highlight the lack of action on MiCASSA.
Ask Senator John Kerry now to speak at the hearing!
John Kerry can lend a vital voice to MiCASSA, which establishes a national
program of community-based attendant services and supports for people with
disabilities, regardless of age or disability. This bill would allow the
dollars to follow the person, and allow eligible
individuals, or their representatives, to choose where they would receive
services and supports. Any individual who is entitled to nursing home or
other institutional services
would have the choice where and how these services are provided.
Two million Americans live institutions and deserve a choice! John Kerry
can bring strong recognition to the cause of freedom!
You can contact John Kerry at the following locations:
Washington office
202-224-2742
202-224-8525 - fax
Boston office
617-565-8519
617-248-3870 - fax
Springfield office
413-785-4610
413-736-1049 - fax
Fall River office
508-677-0522
508-677-0275 - fax
Worcester office
508-831-7380
Kerry for President
617-367-1551
617-523-2033 - fax
On March 22, Senator Kerry said "I applaud the more than 400 ADAPT activists
uniting in Washington, D.C. to demand their voices be heard regarding the
critically important
issue of ending the immoral institutional bias in the Medicaid program We
should help states carry out the Olmstead decision and enact MiCASSA and the
Money Follows the Person Act. As with racial segregation, we must put an end
to the institutional bias in Medicaid that prevents millions of Americans of
all ages from experiencing freedom, independence and choice."
Ask John Kerry to again speak for freedom on April 7!
Contact Bill Henning at BCIL at 617-338-6665 or
bhenning@bostoncil.org for more
information.
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The wisdom of the wise and the experience of the
ages are perpetuated by quotations.
-Benjamin Disraeli |
PA Statewide
Independent Living Council Forums
Our voice was heard. -John
Pistorius
The Pennsylvania
Statewide Independent Living Council (PA SILC) held hearings on the State Plan for
Independent Living (SPIL). These
hearings are supposed to help determine how independent living funds should be used to improve the
lives of Pennsylvanians with disabilities. The hearings were
scheduled for March 23, 25, 26, 30 and April 1, 2004.
Several members of our group attended two
of these meetings and gave our suggestions, ideas and comments regarding the
things we believe need to be addressed. I followed up with a letter to
further clarify my suggestions and to include others. The following is the
letter that I sent to the PA SILC regarding the hearings, accessibility and
the SPIL.
March 30, 2004
Pa Statewide Independent Living
Council
2 N.
Second Street, Suite 100
Harrisburg, Pa 17101
RE:
State Plan for Independent Living
To whom it may concern:
I
am a volunteer with the Pittsburgh Area Brain Injury Alliance, a peer
support organization. I’ve been involved since 1984. In recent years, I’ve
assisted in the creation and facilitation of peer-to-peer support groups for
people who experience non-fatal brain injury, parents and caregivers. I
serve a large, growing constituency of individuals in Southwestern PA.
I am
the creator and webmaster of the
www.pabia.org website and the creator and editor of the PABIA-NEWS,
Support Lines email newsletter. My volunteer activities in this respect
have taught me the value of timely notification on matters of importance to
the people I serve.
Throughout the years of my involvement, I’ve served on several steering
committees, boards of directors and advisory boards and committees. In my
personal life, I’ve created and successfully directed a small corporation.
These experiences have given me insight into the workings of boards and
committees. I understand the need for any board or committee to perform its
duties in a way that satisfies its mission or purpose. Otherwise, it is
operating fallaciously. You must commit to taking action to insure that the
PA SILC sets goals that are in line with the fulfillment of its mission and
purpose. Therefore, it is my pleasure to help you folks set the agenda for
your direction over the next three years.
My
comments are meant to help the PA SILC to advise the Governor and his
administration on the development and implementation of public policies
impacting people with disabilities. The focus of my comments is on policies
which empower Pennsylvanians with disabilities and their supporters. This
includes consumer control, peer support, self-help, self-determination,
equal access, and individual and system advocacy. In order to maximize the
leadership, empowerment, independence, and productivity of individuals with
disabilities the PA SILC must include them in a functional way. To maximize
the integration and full participation of individuals with disabilities into
the mainstream of American society, the PA SILC can make policy
recommendations that will foster the improvement, expansion and provision of
Independent Living services.
I
attended the SPIL hearing that your council held March 26, 2004 at the
Wingate Inn in
Latrobe,
Pennsylvania. While there, I shared some of my views, asked for
clarification about the mission of this Council and expressed my concerns
about the process.
Throughout the next three years, the PA SILC board members have the
opportunity to use your collective power and legal mandate to develop and
secure public policies that insure civil rights and expand options for all
people with disabilities in all aspects of life. The PA SILC has a role and
a responsibility in changing the system because it isn't meeting the needs
of people with disabilities. I am writing to further voice my opinion about
the direction that your council will take in the pursuit of satisfying the
PA SILC mission and in the SPIL.
I
have a clear vision of a unified voice in the future. This is the voice of
the people with disabilities who have not sold out. It is a collective voice
that gives to receive. This voice defines what the people really need to
live independently. It is a harmonious voice that articulates the greater
good. This voice does not fit in the current format. It is a voice of
inclusion and community-based service provision; consensus on consumer
choice; eliminating program eligibility requirements based on medical-model
labeling; and breaking the institutional bias of service provision. This
voice is one that uses functional need as the criteria for service
provision. It is a universal voice that refuses to be taken prisoner. This
voice does not suit the likeness that is currently portrayed. It is a
limitless voice that gets people to look, think and live outside of the box.
This voice is enlightened. It emanates from a sacred, timeless place. This
is a voice that refuses to be what society expects it to be. It is a global
voice that dusts off, unwraps, opens, cleans out and sterilizes the old
container of paradigms to eliminate the barriers they place between people
and true Independent Living. This voice travels far beyond the realms of
expectation. It returns with a model of a new standard of unity and
inclusion. This voice does not sell itself for fame and fortune. It is
willing to pay the price for independence. This voice speaks clearly in the
language of the people it serves. It is the voice that does not portray an
image of so-called independent living while keeping people enslaved. This
voice announces and supports true independence and reveals the pretenders’
lips. It is the voice that cries out through the centuries from the place
where time does not exist. This voice desires to not follow the dreams and
aspirations of self-indulgence. It is the voice that overcomes attitudinal
barriers to true independent living. This is the voice of the meek. It
screams out from the institutional graveyards to free our people.
The
time has come for this council to provide the disability community in the
Commonwealth of Pennsylvania with the service of its mission to live up to
its purpose. That said I’ll go on to testify to this council about the ways
that I envision the aforementioned voice being developed and heard in
Pennsylvania.
The
PA SILC should maintain an open database of its operations. This could easily be
accomplished with a website that includes all public information. This
website could also be used to give public notice of hearings well in advance
of meetings. You could also offer an email ‘alert’ service to improve your
outreach efforts to grassroots group leaders. Increased advertising and an
enlightened outreach program would improve attendance at your public
hearings.
The PA SILC needs to plan the locations of meetings better. You should hold public hearings in
densely populated areas of the state as well as rural areas and those with
lower density populations. In my efforts to promote the recent hearings I
learned that many people were either unable or unwilling to travel 50 (or
more) miles to attend hearings. Most were unable to secure transportation,
did not have an expense account to fund the trip or were unable to take time
off from work. Holding hearings outside of the metro
Pittsburgh and Philadelphia areas presented a significant barrier to a large
number of consumers. Given the fact that few hearings are scheduled, holding
two hearings within a ten mile distance of each other (Greensburg
and Latrobe) was redundant. These two hearings (held a few days apart)
appear to be a slap in the face to the thousands of consumers who live in
the Greater Pittsburgh region. It is unreasonable to exclude the larger
metropolitan areas of the Commonwealth from the hearing process. The PA
SILC should hold more hearings to better accommodate the people
across
Pennsylvania.
The
PA SILC needs to give more notice of upcoming meetings and public hearings.
I believe that you must remove barriers to their participation to form an
accurate assessment of the needs of the people you propose to serve. Three
weeks notice is not enough lead time for most people to make the necessary
arrangements and preparations to attend. Regardless of the number of
responses you receive, under the circumstances, you are not obtaining an
accurate sampling of the needs of all people with disabilities. Whether
active or inactive, employed or not, time constraints amplify other barriers
to full participation in your hearings. You must give more time to the
people to organize their thoughts, ideas and suggestions and to make the
necessary arrangements to attend.
Periodic press releases and information dissemination can be effective
means for announcing these hearings. Your public awareness committee should
create press releases designed to improve awareness of the PA SILC, its
policy recommendations and public hearings. Increased attendance would
improve the input and thereby, the direction of the SILC. Set your next
hearing dates at least twelve months in advance and begin the public notice
campaign immediately upon setting the dates. Notices could be made via press
releases every other month with the first notices containing the dates, the
next containing the dates and places, the third with dates, places and
times. The series of releases could be created all at the same time, but
released on a schedule. Important quotes about the PA SILC, its membership,
mission and purpose could be used as additional benefits to consumers. Even
if you were to announce the dates, etc. in a series of six press releases
each month in advance of the hearings, it would be better than the way you
are doing it now. This process would insure adequate notice to the public
and improve hearing attendance. The press release series could easily be
programmed into an email auto responder and sent out to disability advocates
on a schedule, automatically. The only effort required in this action is to
create the releases and place them into the auto responder. The PA SILC
website could have a link that permits people to access this information
with one click of the mouse button. Giving people the opportunity to access
information sooner and over an extended period of time will help the PA SILC
to expand options for all people with disabilities in this aspect of life,
thereby enabling them to participate.
The
SILC hearings should have an impartial, disinterested, non-board member
stenographer to insure exact, accurate recording of the testimony. This would instill confidence in
people who otherwise believe that their ideas will not be valued, accepted
or included. This would also improve attendance at the SPIL hearings. The
record of these hearings could then be made available to anyone interested
via several means including posting on the PA SILC website and via email
auto responders.
The
PA SILC board could benefit from additional leadership training.
The
PA SILC board can improve the time schedule of public hearings to
accommodate more people who are employed.
To improve access to all persons with disabilities and others, the hearing
time frames should be expanded to include people who would attend during
their lunch break. This could be accomplished by splitting the hearing into
two parts, with one session held from 10 am to 1 pm with an hour long break
to accommodate the needs of all persons involved. It would be a reasonable
accommodation to the people who refuse to jeopardize their job. Many people
would not even consider attending the current hearings because of time
constraints.
The
PA SILC board should address transportation issues. All public utilities need to be
accessible. This includes cab companies. Every cab company in the
Commonwealth should accommodate all people, not just those who do not use
power mobility equipment. People with disabilities could use transportation
tickets that did not restrict their choice of service providers. In the
Allegheny County area, instead of being herded into ACCESS vans, the
consumers would have real choice. If this were to happen, the ACCESS
transportation system would have some competition. That would prompt them to
improve their service delivery model to better include all people with
disabilities. This would also break down county specific barriers.
Incentives to create smaller regional transportation networks can be
established to improve the availability of accessible transportation for
people with disabilities even in remote areas of the Commonwealth. This
could be accomplished by providing tax incentives to offset start-up and
operating costs. At the very least, the SILC could recommend that a study
be performed to accurately assess the need for improved accessible
transportation systems.
The
PA SILC should recommend policy changes that include educating our educators
about the functional needs of people with cognitive disabilities. Too many parents who are
themselves just learning about the functional needs of their children, are
forced to struggle to get the schools to provide a free, appropriate
education to their children. Often times, children who sustain brain
injuries are left with a complicated series of cognitive, behavioral and
emotional disabilities. Very often, these children appear to be
without disability. Sometimes, their disabilities are labeled as mental
health or mental retardation disabilities. Instead of addressing their
functional needs, the educators routinely make parents fight for their
children’s rights. Educating the people who operate our schools would
improve the educational outcomes of children with disabilities.
The
PA SILC should recommend policy changes that include working with schools to
promote the concept of Independent Living with the educators, students and
their families.
Raising public awareness starts in our schools. Educating people with
disabilities and others must be a primary concern. The PA SILC website could
be used to help disseminate information about legislative issues that
influence education and affects an individual’s ability to live
independently. The process of raising public awareness would help people
with disabilities to experience higher quality of life standards.
With
state and federal budget cuts becoming commonplace, The PA SILC needs to
further develop a public relations campaign to increase additional methods
of fundraising for CIL’s.
This
organized effort could establish additional alternative sources of funding
through foundations, corporate donations and the general public. Increased
funding sources would positively impact the operating budgets for Center’s
for Independent Living. This would improve accommodation of the needs of the
people served and increase the ability of CIL’s to accomplish their
missions. Some CIL’s need more to operate than others by virtue of their
geographical location and population of their service area. This should be
reflected in their budgets and fundraising efforts.
The
PA SILC needs to advocate for a CIL budget increase to cover the salary of
fundraisers in each CIL.
If they do not already have one, each CIL could hire a performance based
fundraiser. Their job would be to ‘sell’ the CIL to funding sources. They
could be paid a base salary plus performance based ‘commission.’ Their base
salary should come as an increase in funding to the CIL from the state or
federal government. This expense would be offset by the reduction in the
need for additional tax-based funding and increase in services provided
which would enable more people to become taxpayers instead of tax users.
The
PA SILC should recommend reduction or elimination of the population criteria
used to determine the number of CIL’s in rural
Pennsylvania.
I
believe the population criteria established at 500,000 per CIL is
unreasonable at best. The percentage of our population experiencing
disability means each CIL is expected to serve more consumers than their
operating budgets will permit. In areas with large populations, this number
increases exponentially. This significantly reduces the percentage of the
population with disabilities that can effectively be served. In rural areas,
the 500,000 number acts (in conjunction with transportation issues and other
societal barriers) to discriminate by making it impossible for people to
access the CIL. Undoubtedly, people who live the greatest distance from a
CIL must overcome the largest barriers to accessing CIL services. This form
of discrimination must be addressed to insure civil rights and expand
options for all people with disabilities in all aspects of life. Therefore,
I believe the population criteria number needs to be reduced or eliminated.
The
PA SILC should recommend and advocate for more CIL’s.
The geographical criterion is
unreasonable in the major metropolitan areas of the Commonwealth. In
Southwestern PA, the TRCIL is unable to handle all of the people in its
territory. This factor significantly affects the real number of people who
are excluded from accessing services and acts to cause a waiting list. In
the process of waiting, people with disabilities are not able to receive
services that could empower them to live independently. Even if we use the
current standard of one CIL per 500,000 residents, the people in heavily
populated areas are grossly underserved. Creating and funding more CIL’s
should be a priority in the next three years.
The PA SILC board should hold all meetings, hearings etc. in a manner that
is cognitively accessible.
Almost 9,000 people survive brain injury each year in Pennsylvania. This
number only represents the reported cases. Many of the people who survive
tbi experience cognitive disabilities. My experience at the SPIL hearing
shed light on the fact that the planning and holding of that hearing was not
cognitively accessible. The HCBS has an excellent guide for planning
meetings, conferences and gatherings entitled Making Accessibility Real.
This guide should be used by the PA SILC to insure inclusion of all people
with disabilities based on functional need. Otherwise, from what I
witnessed, and experienced, the PA SILC is participating in discrimination
against people experiencing cognitive disabilities and restricting options
for people with disabilities in this aspect of life. The PA SILC needs to
address the needs of people with cognitive disabilities in all aspects of
its function and operation.
The
PA SILC should strengthen support to the NCIL to reinforce the collective
voice of consumers on national issues.
This would improve the ability of people with disabilities to make unified
positive inclusion and integration strategies occur on a national level. By
pooling talent and skills, the national organization could assist the state
SILC’S and CIL’s to accomplish their respective missions and thereby better
serve the people.
The
PA SILC should be the organization that unifies the voice of the people with
disabilities in the
Commonwealth of
Pennsylvania.
It should set a precedent in public policy influence here that can become a
model for other state SILC’s to follow. And it should be the leader in the
push for a truly unified national voice of all people with disabilities to
develop and secure public policies that insure civil rights and expand
options for all people with disabilities in all aspects of life.
Respectfully submitted,
John
Pistorius
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|
There is a wisdom in this beyond the rules of
physic: a man's own observation what he finds good of and what he finds
hurt of is the best physic to preserve health. -Francis Bacon |
FEC Proposal to Limit
Nonprofit Advocacy
WHAT YOU CAN DO RIGHT NOW
In Priority Order
The following memo from an alliance of civil rights groups responds to the
Federal Election Commission's recent vote to consider redefining many
nonprofit groups as political
committees. Such a move would subject many nonprofit groups to vast
reporting requirements and effectively limit advocacy. The FEC Working
Group urges us to contact
members of Congress and the FEC.
Jonathan Young
JFA Moderator, AAPD
=============================
TO: All Nonprofit Organizations
FROM: Federal Election Commission (FEC) Working Group
DATE: March 26, 2004
RE: Summary and timeline of efforts to defeat proposed FEC rule
changes that would restrict the free speech rights of nonprofit groups.
This message provides a summary of the efforts discussed at the FEC Working
Group meeting held on March 24th at People For the American Way's offices to
defeat proposed FEC rules that would severely restrict nonprofit advocacy.
Please distribute this message widely to your networks of nonprofit groups,
including but not limited to nonprofits operating as 501(c)(3), 501(c)(4),
501(c)(5), 501(c)(6), or 527 organizations.
SUMMARY OF OUR OBJECTIVE
On March 4, 2004, the FEC voted 5-1 to consider new rules that would have
the effect of redefining many nonprofit groups as political committees,
thereby forcing these groups to meet vastly more stringent financial and
reporting requirements or to forego many of the advocacy and civic
engagement activities at the core of their missions.
The FEC Working Group believes that:
1) the proposed rules clearly exceed the FEC's authority;
2) the proposed rules attempt to impose limits on nonprofits' free speech
rights that Congress and the Supreme Court have clearly rejected; and,
3) given the above, the proposed rules should not be considered in the
middle of an election year and should only be considered by Congress, not
the FEC.
Therefore, the FEC Working Group is determined to defeat the proposed FEC
rule changes.
CAMPAIGN TIMELINE
March 31 - FEC Working Group will circulate comments to the FEC with
specific instructions on how nonprofit groups may sign on. A sample e-mail
alert to other nonprofit groups
and to nonprofits' individual members will also be provided.
April 5, 9 a.m. - Deadline for nonprofit groups to sign on to FEC comments
(nonprofits signing on after this time cannot testify at the FEC hearing).
April 14 and 15 - FEC hearing on proposed rules.
May 14 - Earliest FEC could issue final proposed rules.
WHAT YOU CAN DO RIGHT NOW
1) Notify other nonprofits of the FEC proposed rule changes and the efforts
to defeat them. Visit the link below for:
- talking points
- specific examples of how various nonprofit entities would be impacted
- a copy of the comments to the FEC in February that were endorsed by over
500 organizations in opposition to an FEC Draft Advisory Opinion that also
threatened nonprofit advocacy
http://www.pfaw.org/pfaw/general/default.aspx?oId=14670
2) Send an organizational letter of opposition to Members of Congress and
urge them to submit comments opposing the proposed rule changes to the FEC.
3) Send an e-mail alert to your individual members (if applicable) asking
them to write the FEC. A sample grassroots alert will be sent shortly for
you to distribute to your members.
4) Notify your members and/or affiliates in the metropolitan Washington,
D.C., area of the April 14-15 FEC hearing and ask them to attend.
# # #
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|
Remember, we all stumble, every one of us.
That's why it's a comfort to go hand in hand.
-Emily
Kimbrough |
Talk Back!
Subscriber
Comments
Thanks for listening and talking with me. Have a nice day, be safe, God
bless, and you are doing a great job. -Barb
Your words are good and I know there is truth in what you say. -John
Keep up the great work on your list serve and e-newsletter. I enjoy reading
it. -Alan
Thanks for the work you do in PA. Regards, Barbara
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|
Wisdom comes by disillusionment. -George
Santayana |
PROPERTY TAX RELIEF
IssuesPA Takes a Look at The Numbers
The debate over whether to authorize slots for school property tax relief
statewide heats up this week as policymakers consider proposals to provide
property tax relief primarily through an expansion of legalized gambling.
If Pennsylvania places this bet, who are the real winners and losers?
IssuesPA continues its series on Property Tax Relief by taking a look at the
numbers - district-by-district - and looking at the impact on different
types of taxpayers.
**Property Tax Relief: Taking a Look Inside the Numbers
The goal? Property tax relief through expanded legalized gambling. The
potential result? Take a look at how taxpayers in different school districts
would fare.
http://www.issuespa.net/articles/7425/
**Property Tax Relief: The Numbers
Click here to learn how districts in your region would fare. Data sorted by
county and district.
http://www.issuespa.net/articles/7422/
**Property Tax Relief: Assessing the Impact on Taxpayers
How would proposed property tax relief proposals impact different taxpayers:
renters, homeowners, high, middle and low income? IssuesPA takes a closer
look.
http://www.issuespa.net/articles/7426/
**Property Tax Relief in Pennsylvania: The Devil's In the Details
It's easy to get caught up in the rhetoric and the numbers. And it's just as
easy to get stuck with "tax reform" that really isn't. There's still time to
deal with issues of risk, benefits, and fairness before state policymakers
place this big bet for Pennsylvanians. Later may be too late, because this
is a bet we can't afford to lose.
http://www.issuespa.net/articles/7114/
LINKS TO RELATED STORIES ON ISSUESPA.NET
Want to know more about the gambling debate and property tax relief
proposals? Look below for links to background information.
PROPERTY TAX RELIEF
Slots and Property Tax Reduction: Unfinished Business
http://www.issuespa.net/articles/6352/
The Formula: Here's How It Might Work
http://www.issuespa.net/articles/7116/
Referenda and their Implications for Education Finance
http://www.issuespa.net/articles/7118/
What's Behind the Rhetoric?
http://www.issuespa.net/articles/7117/
GAMBLING
Gambling Toward Tax Reform -- In the Game to Win
http://www.issuespa.net/articles/4295/
Gambling Toward Tax Reform -- Putting a Billion Dollars in Perspective
http://www.issuespa.net/articles/4294/
Gambling Toward Tax Reform -- In the Mix
http://www.issuespa.net/articles/4293/
Gambling Toward Tax Reform -- Gambling in Other States
http://www.issuespa.net/articles/4292/
PENNSYLVANIA'S TAX SYSTEM
On Taxes: Where Does Pennsylvania Really Stand?
http://www.issuespa.net/articles/315/
Pennsylvania's Local Taxation "System"
http://www.issuespa.net/articles/304/
The Philadelphia City Wage Tax -- A Special Case
http://www.issuespa.net/articles/4291/
The Property Tax -- The Tax People Love to Hate
http://www.issuespa.net/articles/3531/
How Do Property Taxes Measure Up?
http://www.issuespa.net/articles/3491/
The Property Tax -- How Steep Is The Price?
http://www.issuespa.net/articles/3532/
(Editors note: My schedule has not permitted me to read and review all of
the information presented by IssuesPA on this subject. I'm offering it here
as a way for readers to enrich their knowledge on this issue.)
ABOUT ISSUESPA AND E-ALERTS
The IssuesPA E-Alert is a product of the Pennsylvania Economy League's
IssuesPA project. IssuesPA is a nonpartisan statewide awareness project
focused exclusively on raising the issues most critical to Pennsylvania's
economic future. It is funded in part by the Pew Charitable Trusts, The
Pittsburgh Foundation, The William Penn Foundation and The Heinz Endowments.
The Pennsylvania Economy League (PEL) is an independent, nonprofit public
policy research organization. PEL is a force for positive change - the
state's leading regionally based, statewide public policy organization.
Working with Pennsylvania's public and private sectors, PEL provides
independent research and insight on emerging issues to stimulate public and
private action to make Pennsylvania a better place to live, work and do
business. PEL's goal is to create a knowledgeable corporate and civic
audience that will ensure the Commonwealth's economic competitiveness.
Pennsylvania Economy League
17 S. Market Square, Suite 310
Harrisburg, PA 17101-1113
717-234-3151
E-Alert@IssuesPA.net
www.IssuesPA.net
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Table of Contents
|
Wisdom is not finally tested in the schools,
Wisdom cannot be pass'd from one having it to another not having it,
Wisdom is of the soul, is not susceptible of proof, is its own proof. -Walt
Whitman |
Cognitive Dissonance
IX
Us and Them
John Pistorius
Please
Click Here to read this installment.
Thanks for reading on. -JP
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Table of Contents
|
All this worldly wisdom was once the
unamiable heresy of some wise man. -Henry David Thoreau
|
Under Cottonwoods
A novel by Steve Grace
Steve has graciously sent me a copy of his novel for
review. I'll be including my comments in this newsletter as soon as I can.
In the meantime, here is a note from the author:
-I'm not a survivor, but a relative of mine is. When
I was a teenager she sustained a traumatic brain injury in a car accident.
In college, a friend of mine died of massive head trauma from a fall while
rock climbing. He was in a coma before he died; I've spent a lot of time
over the years wondering what his life would have been like if he'd come out
of the coma. After college, for six years, I worked with survivors of
traumatic brain injury. Many of them had their injuries at a young age,
leading to developmental disabilities. My favorite part of the job was
finding ways for the people I worked with to participate in outdoor
activities. We went skiing and rafting, camping and fishing. My novel, Under
Cottonwoods, was inspired by those experiences.
I hope my book helps raise awareness about survivors. I wrote it for the
average reader of fiction with little or no background in the fields of
traumatic brain injury and developmental disability. I would like readers to
come away from the story thinking that someone like Walter--who survives a
traumatic brain injury as a boy, leading to a developmental disability--is
worth getting to know.
Please feel free to contact me if you have any question or comments about
Under Cottonwoods.
Stephen Grace
2458 N. 9th St. #22
Laramie, WY 82072
(307) 742-9198
stevegrace1@juno.com
Return to Table of Contents
|
Wisdom does not show itself so much in precept as
in life - in firmness of mind and a mastery of appetite. It teaches us
to do as well as to talk; and to make our words and actions all of a
color. -Lucius Annaeus Seneca |
Free
Support Group Tools
Free Help for
anyone Starting or Running Peer Groups
Contact John Pistorius at
jp@pabia.org to receive a free CD with the
support group tools developed so far.
Return to Table of Contents
|
The growth of wisdom may be gauged exactly by the
diminution of ill temper. -Friedrich Nietzsche |
Fatty Acids Reduce Risk of Alzheimer's Disease by 50%, Protect Brain
Functions
Super charge your
brain
Middle-aged adults who eat fatty fish regularly or take supplements of
marine omega-3 polyunstaurated fatty acids are less likely to experience
impaired cognitive function and speed, suggests new research from the
Netherlands.
Higher dietary cholesterol however was associated with an increased risk
of impaired memory and flexibility.
The study is the latest to investigate the relationship between dietary
fats and early symptoms of dementia such as cognitive performance in ageing
people.
Researchers at Tufts University in Boston, US last year found that
boosting levels of docosahexaenoic acid (DHA) in the blood and eating about
three fish meals each week can almost halve the risk of Alzheimer's disease
in elderly men and women. Another study, published in the British Medical
Journal, found that elderly people who eat fish or seafood even once a week
are at lower risk of developing dementia, including Alzheimer's disease.
The cause of Alzheimer's, a debilitating disease which affects an
estimated 12 million around the world, is still not known and it is expected
to increase along with the numbers of elderly.
The new study, by researchers from the University Medical Center Utrecht
and the University of Maastricht, not only demonstrated the benefits of
omega-3s but also the impact of high cholesterol.
The researchers used data from a cross-sectional population-based study
of 1,613 subjects ranging from 45 to 70 years old. Over a five-year period
they tested for memory, psychomotor speed, cognitive flexibility (i.e.
higher order information processing), and overall cognition. A
self-administered food-frequency questionnaire was used to assess eating
habits and risk was adjusted for age, sex, education, smoking, alcohol
consumption, and energy intake.
Marine omega-3 polyunsaturated fatty acids (eicosapentaenoic acid and
docosahexaenoic acid) were found to reduce the risk of impaired overall
cognitive function by almost 20 per cent and speed by 28 per cent, reports
the team in this month's Neurology (62:275-280). Fatty fish consumption also
had a similar benefit on cognition.
Meanwhile higher dietary cholesterol intake was significantly associated
with an increased risk (by 27 per cent) of impaired memory and flexibility.
Increase in saturated fat intake also raised the risk of impaired memory,
speed, and flexibility although not significantly.
Researchers speculate that DHA levels could be a risk factor for
development of the disease. It is the most abundant fatty acid in the brain,
which consists mostly of fat. About a fifth of that fat cannot be formed by
the body however and people have to get it from their diet.
Another study in the same journal shows that free testosterone
concentrations were lower in men who developed Alzheimer's disease, and
higher levels of the hormone could also offer protection against the disease
in older men.
(Source: LONGEVITY NEWS, February 3, 2004 to subscribe, visit their
website at http://www.youngagain.com/
)
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|
Wisdom is not wisdom when it is derived from books alone. -Horace |
Working Order
Nonprofit small business incubator
Last November, Megan from Working Order spoke at the
PABIA peer support group meeting. I asked her to send me some information to
be included in our newsletter, which she promptly did. However, her message
was lost in my computer switch and has now been retrieved. Please forgive me
for the delay.
Working Order promotes entrepreneurship and other
employment opportunities for people with disabilities. They provide support
for self-employment and alternative careers and offer a diverse, cooperative
work setting that also serves people without disabilities. Their services
include, functional assessment of skills, feasibility planning, long-term
supports for those who choose self-employment as a career, technical
assistance as well as employment services. If you would like more
information on Working Order, please call 412-782-5344 or email
entre@workingorder.org.
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|
This is the highest wisdom that I own; freedom
and life are earned by those alone who conquer them each day anew.
-Johann Wolfgang von Goethe |
Pittsburgh Area Brain Injury Alliance
Upcoming Meeting and Social Event Notices
Pittsburgh
Monroeville
Swissvale
Oakland
Indiana Twp.
Indiana County
Bowling Event
Next Pittsburgh Area meeting date:
Tuesday, May 4, 2004
TIME:
7:00 P.M.
TOPIC: TO BE ANNOUNCED
PLACE: 1323 Forbes Avenue, Pittsburgh Near Mercy Hospital and AJ
Palumbo Center
ADMISSION: Free
PARKING: Free Parking Lot adjacent to the building.
Contact: Ed Crinnion at 412.761.9870 or John Pistorius at
412.481.5482.
Refreshments provided.
Upcoming Pittsburgh Meeting Dates:
-
May 4
-
June 8
-
July 6
-
August 3
-
September 7
-
October 5
-
November 2
-
December 7
Back to group list
Return to Table of Contents
The next Indiana Twp. meeting date:
Tuesday, April 13, 2004
Time:
7:00 P.M.
Place: the McLaughlin Education Center of HealthSouth, Harmarville.
Admission: Free
TOPIC:
Parking: Free Parking in the HealthSouth Parking Garage
Contact: Tom Byrnes at 412-531-0343
Refreshments provided.
Upcoming Indiana Twp.
Meeting Dates:
-
MAY 11
-
JUNE 8
-
JULY 13
-
AUGUST 10
-
SEPTEMBER 14
-
OCTOBER 12
-
NOVEMBER 9
-
DECEMBER 14
Back to group list
Return to
Table of Contents
The next Monroeville Area meeting date:
Thursday, April 8, 2004
 TIME:
7:00 P.M.
PLACE: Cross Roads Presbyterian Church, 2310 Haymaker Road,
Monroeville, Pa.
TOPIC:
ADMISSION: Free
PARKING: Free parking lot adjacent to the building.
Contact: Denise Patterson at
deenomad@aol.com or Paul Damon at 412.372.2888
Refreshments provided.
Upcoming Monroeville Meeting Dates:
-
May 13
-
June 10
-
July 8
-
August
12
-
September 9
-
October
14
-
November
11
-
December
9
Back to group list
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New-
Indiana County Brain Injury
Support Group
 When:
Thursday, April 15, 2004
Time: 7 to 9 pm
Topic: Peer Support Discussion
Place: Indian Haven Community Home, 1675 Saltsburg Ave., Indiana, PA
15701
Admission: Free
Parking: Free Parking Lot adjacent to the building.
Contact: Becky Myers 724.349.5934 or BILL Compton 724.639.9416
Back to group list
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Table of Contents
NEW Swissvale Area Brain
Injury Peer Support Group forming.
Mike and Marilyn Peters have agreed to
host a new peer-to-peer support group in Swissvale. The meetings will be
held Monday, May 3, 2004 in the social hall of the St. John's Lutheran
Church, Swissvale, PA. All persons interested in peer support are welcome
and encouraged to attend. More specific information will be sent out in
advance of the meeting.
Back to group list
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Table of Contents
NEW
Focus group
has started in
Pittsburgh to address the needs of adults recovering from Brain Injury who
are
 facing
the challenge of professional role continuation, and those seeking
reintegration into educational and work settings.
Individuals looking to obtain
or maintain increased levels of independence and community functioning are
encouraged to attend.
This peer directed,
professionally facilitated support group started meeting bi-monthly Monday,
February 9, 2004. The next meeting will be held Monday, April 12, 2004.
Persons interested in
attending can contact John Pistorius at 412.481.5482 or
click here.
Upcoming
meeting dates
Back to group list
Return to
Table of Contents
Western PA BIM / HS
Recreational Bowling League
 Where: Fun Fest Entertainment Center, 2525 Freeport Road, Pittsburgh,
PA 15238
WHEN: Monday April 19th.
COST: $7 per person, for 3 games, shoes, 2 slices of pizza
& unlimited fountain drinks.
TIME: 3:30 PM TO 6:30 PM on Lanes #35 to 40
Bowling at Fun Fest is Wheel Chair Accessible and there are Bowling Ramps.
For more information contact Tom Byrnes at 412-531-0343.
Back to group list
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Table of Contents
|
"The only true wisdom is in knowing
you know nothing." -Socrates |
Thank You!
These are the people that make it possible.
Ed Crinnion (412)
761-9870
for your continuing efforts in keeping the
Pittsburgh Area Brain Injury Alliance together, funding the organization's
website and supplying refreshments for PABIA meetings.
Becky Myers
(724) 349-5934
and Bill Compton (724) 639-9416
for your continuing commitment to peer support in Indiana County.
Denise Patterson and Paul
Damon (412)
372-2888
for your ongoing coordination of the
Monroeville area Peer Support Group.
Ann Ciotoli, MaryAnn
Stritmatter
412-828-1300
and Tom Byrnes
(412) 531-0343
for your commitment to peer support in
Indiana Twp.
Malin
Lowenadler-Shadel and Lisa Taubman, for
your help with the new group addressing the interests and needs of adults
recovering from Brain Injury who are facing the challenge of professional
role continuation, and those who seek reintegration into educational and
career settings.
Mike and Marilyn
Peters and Malin Lowenadler-Shadel
for your help with the new group starting in Swissvale.
 Jim
Sproat and Realty Counseling Co. Inc.
(412) 381-1166
for your support of the PABIA-NEWS,
electronic newsletter and for the use of your digital camera. We greatly
appreciate your help. Anyone interested in contacting Jim to thank him
personally, can call or visit his website at
http://www.realtycounseling.com.
PABIA-NEWS Contributors-
your insight, articles, poems and comments are vital to the success of this
publication.
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|
Wisdom has its root in goodness, not goodness its
root in wisdom. -Ralph Waldo Emerson |
PABIA-NEWS
Subscriber Policy
We aim to inform, inspire and empower people to
be their best. We value every subscriber and respect your privacy. Our
subscriber list is NOT made available to anyone for any reason. We do not
sell, rent or loan our mailing list. If you find this newsletter to be of
value, we invite and encourage you to forward it (in its entirety, please)
to your friends. Sometimes people choose to stop receiving "PABIA-News". You
may unsubscribe at any time by following the instructions provided at the
end of this message. We don’t want to send this to anyone who doesn’t wish
to receive it, and we will make every good faith effort to remove you if you
notify us of your intent to be removed.
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The doors of wisdom are never shut. -Benjamin
Franklin |
Subscribe/Unsubscribe Instructions
Visit:
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follow the simple procedure on our list server's form to add or remove
yourself.
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To Subscribe-
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|
And so, without a sword, David
defeated and killed Goliath with a sling and a stone!
-1Sa 17:50 |
'Till next time, Seek to be and remain
Barrier-Free.
|
