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Inside This Issue:

• Editor's Note -

• Maps Tell The Story of Changing Wealth in PA

• 2003 Medicaid Waiver Data

• Head Injury Program Funding

• IDEA UPDATE

• FREE Child Trauma Courses Online

• Talk Back! -Subscriber Comments

• Disability Advocates Meet with White House Staff
  American Association of People with Disabilities (AAPD)

• Cognitive Dissonance X by John Pistorius

• Free Support Group Development Tools

• Upcoming Meeting and Social Event Notices

• Thank You!

• PABIA-NEWS Subscriber Policy

• Subscribe/Unsubscribe Instructions

• ETC.

Editor's Note

Hi Folks,

What a wonderfully busy time in my life! It seems as if the floodgates of goodness have opened up and poured a blessing upon me. Of course that means that more demands are being placed on my time which leaves less time for me to do this newsletter. Nevertheless, I hope you find it to be useful and inspiring.

Our own Ed Crinnion has learned that both of his parents are in critical condition. His mother has slipped into a coma that appears to be life threatening because of her other medical conditions. His father fell recently and sustained a brain injury and had a blood clot removed from his brain. Please remember Ed's folks in your thoughts and prayers.

John

MAPS TELL THE STORY OF CHANGING WEALTH IN PA

Maps for each of the state's 14 metro areas tell the story of changing patterns of wealth. Changes in personal income and changes in market value of real estate are mapped by school district for each metro area.

http://www.issuespa.net/scorecards/5961/
 

2003 Medicaid Waiver Data

Information Bulletin #69 6/04
by Steve Gold

Medicaid "Home and Community-Based Services" Waivers make up the overwhelming bulk of community-based long term care expenditures. States have focused on using the "Waiver" to expand community services. With the FY 2003 Medicaid data now available, the 2003 total Waiver expenditures were $18.6 billion, up from $16.3 billion in 2002, up from $12.7 billion in 2000, and up from $8.2 billion in 1997. [See www.stevegoldada.com, click on Medical Assistance and then scroll to Information Bulletin #19 for the 1997 - 2000 breakdown.]

This means that in the past seven years there has been an increase of 129. Even just in the past four years there has been nearly a 47 percent increase in Waiver expenditures.

What that means is that people with a variety of disabilities are living in the community instead of in institutions. Remember that in order for persons to be eligible for waiver services, they must meet the institutional level of care.

These increases are the DIRECT RESULT of your pressure on a state-by-state level during the past ten years. We are MAKING PROGRESS; we must keep it up.

2003 TOTAL HCBS Waivers ------------ $ 18.3 billion

MR/DD --------------------- $ 13.97 billion (75.2% of total waivers)
Aged/Disabled ------------ $ 3.345 billion (18.0% of total waivers)
Physical Disability ------ $ 508 million (2.7 % of total waivers)
Aged --------------------- $ 382 million (2.1% of total waivers)
Tech Dependent --------- $ 91 million (0.5% of total waivers)
Brain Injury -------------- $ 163 million (0.9% of total waivers)
AIDS/ARC ---------------- $ 76 million (0.4% of total waivers)
Mental Illness ------------ $ 37 million (0.2% of total waivers)

The rate of growth by "target population" between FY 1998 and 2003 shows:

MR/DD --------------------- 13.8%
Aged/Disabled -------------- 15.8%
Physical Disability ----------- 18.4%
Aged ------------------------ 17.6%
Tech Dependent -------------- 9.0%
Brain Injury ------------------ 31.4%
AIDS/ARC ------------------- 3.5%
Mental Illness ---------------- 41.8%

All of this national data has been compiled by The MEDSTAT Group from data submitted by your State to CMS and both the national and State-by-State information will be available by State at www.medstat.com.

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 divided into different subjects.

To contact Steve Gold directly, write to stevegoldada@cs.com

Head Injury Program Funding

Deborah Delgado

The Head Injury Program, administered by the Department of Health, is designed to provide funding for more intensive rehabilitation services for persons who have sustained a TBI. Some qualifications include a diagnosis of TBI, medical assistance eligible, an assessment by a Rehab Specialist to determine the person's ability to participate in rehab,
and if qualified, funding for $100,000 or one year, as determined by the Rehab Plan, whichever comes first.

For information about HIP, go to www.health.state.pa.us.  On the right hand side, you'll see Quick Clicks. Click on "Head Injury Program".  You will then see the phone numbers (717-772-2762 or 1-800-PA HEALTH). One can also click on "Email Us" and get more information via email.
 
The difficulty in accessing the Head Injury Program funding that is languishing in the bank is that it is legislated funds. The HIP receives an allocation each year of $3 million.  The only way for a person to  access some of that is to apply for the Head Injury Program.
The application is not user friendly. However, on a very positive note, I am very  happy to say that the BIA of PA has gotten a grant from DOH to begin to provide some assistance for new applicants, to help with filling out the application. BIA expects to start up around October 1.

To voice concerns about the lack of available money being used by HIP, even though they receive an annual appropriation of $3,000,000, there are three suggestions for voicing concern. One is to email Mike Miller, chair of TBI Advisory Committee for DOH. Mike is also a parent of a person who sustained a TBI and actively involved in BIA of PA. Mike's email address is MJMILLER@epix.net.  One can also go to the DOH website
and click on the "Email Us" and leave a message there.  One can also send a letter to Secretary Calvin Johnson, Department of Health, PO Box 90, Health and Welfare Building, Harrisburg, PA  17108.  For any additional information or clarification, please contact Deborah Delgado at PA Protection and Advocacy, 1-800-692-7443,  X117.
 

IDEA UPDATE

Shari Krishnan

 

JUNE 1, 2004

GETTING IN TUNE IN JUNE!

It is time for all of us to begin to orchestrate our next steps in the IDEA reauthorization process. Although we may have different advocacy agencies, techniques, and instruments for delivering our messages, we need to strike collaborative chords which clearly demonstrate that we are all working together in concert.

Even though a holiday weekend just ended, some of our tireless parents and advocates spent it working on some new campaign tools for us to use. They were e-mailing messages back and forth about what new call-in days may look like and toward whom they will be targeted. Some were developing updated sets of talking points to help build confidence in all of us to most effectively use these new tools. Yet others were figuring out how to promote our IDEA messages (even on the sides of robots and backs of tee shirts). The point of all of this being that parents, advocates, and students need to get the word out that this IDEA reauthorization (with the two bills presently on the table) will harm students.

You will see some of these newly developed tools and tips posted to our Breaking News page, starting this week. Please keep checking www.ourchildrenleftbehind.com for updates.

Although some advocacy agencies are saying that IDEA reauthorization may not go through this year, we still need to be prepared and positioned for the next steps in the legislative process. We have heard all of this before (that S.1248 wasn’t coming to the Senate floor and IDEA wouldn’t happen this year), yet the process boldly moved forward anyway. So the OCLB team feels that it is better to be safe than sorry; hence it is wise to be ready.

Rest assured that the Our Children Left Behind team is listening to the advice of many parent leaders and trying to distill the information into small parts, easy for our visitors to understand and disseminate. We also closely monitor those suggestions that seem to make the most sense for families who visit our Web site and interact with us regularly.

A common concern among many of the advocates and families from whom we are hearing is that they dread Part B of S.1248/H.R.1350 moving into the Conference Committee at all. This is because both bills have their own sets of dangers and very few sprinklings of benefits. However, it is felt that any illusion of benefits that one wants to find in either of the bills will be permanently eclipsed by the combination of absolutely terrifying dangers that have the real potential to harm 6.5 million students when these bills are reconciled in Committee.

We hope that all of our readers have started to read the bills, or at least will skim through the Part B sections of them so that you can draw your own conclusions and keep us on our toes. We appreciate your advice and your telling us about everything that you are hearing (whether you think it may be a rumor or not). So please stay in touch throughout the summer!

Can you believe that it is June 1st? Where does the time go? Hopefully time will be on our side. I just read the underside of my root beer’s bottle cap. It said, “A sudden change in plans will lead to good fortune.” I’m keeping my fingers crossed!


Shari Krishnan, today's parentvolunteer@ourchildrenleftbehind.com
 

 

** Click here for WHAT YOU CAN DO RIGHT NOW **

 

For more information, discussion forums, and our archives, please visit http://pub60.ezboard.com/bourchildrenleftbehind

 

©2004 Our Children Left Behind.

Our Children Left Behind [OCLB] was created and is owned/operated by parent volunteers (Shari Krishnan, Tricia & Calvin Luker, Sandy Alperstein, and Debi Lewis). Permission to forward, copy, and/or post this article is granted provided that it is unedited and attributed to the author(s) and www.ourchildrenleftbehind.com. For more about OCLB or to share information, please contact parentvolunteer@ourchildrenleftbehind.com.
 

FREE Child Trauma Courses Online

From http://www.childtraumaacademy.com/

Every year millions of children undergo physical or emotional trauma. On this site you'll find free online courses that offer creative and practical approaches to understanding and working with maltreated children.

Course 1

The Amazing Human Brain and Human Development
Discover the hows and whys of the human brain, and gain a better understanding of brain functioning in maltreated children.
 

Course 2

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Learn the physiological and psychological aspects of trauma, the effects of this trauma on our society, and how you can help.

Course 3

The Cost of Caring: Secondary Traumatic Stress and the Impact of Working with High-Risk Children and Families

CEU credits or a Certificate of Completion may be available to those who need them. Check with your licensing board. They may offer reciprocation or personally provide you with approval to take these courses. If not, email CTAproducts@aol.com and they will keep you posted on the various licenses they acquire.

Talk Back!

Subscriber Comments

You are truly an inspiration of strength. I have been through a lot in my life too but not to the degree as you.  I am really good at reading people and I know you to be a quality person.  You have  a tremendous strong ability to survive and you are now entering into the best years of your life.-Cynthia
 

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Disability Advocates Meet with White House Staff
American Association of People with Disabilities (AAPD)

From AAPD:

On Friday, June 4, representatives of five national disability groups met with Margaret Spellings, the Assistant to the President for Domestic Policy, to discuss some longstanding issues and opportunities in disability policy for the Bush Administration.

In attendance at the meeting from the disability advocacy community were Curt Decker, Chair of the Consortium for Citizens with Disabilities and Executive Director of the National Association of Protection and Advocacy Systems; Steve Eidelman, Executive Director of The Arc of the United States; Anne-Marie Hughey, Executive Director of the
National Council on Independent Living; Margaret Stout, President of the National Alliance for the Mentally Ill Board of Directors and Executive Director of the Iowa NAMI
affiliate; and Andrew Imparato, President and CEO of the American Association of People with Disabilities. Attending for the White House in addition to Margaret Spellings were Tracy Justesen from the Office of Policy Development within the Domestic Policy Council and Steve Lineberry from the Office of Public Liaison.

Imparato began the meeting by thanking Spellings for agreeing to the meeting and suggesting that the President's goals articulated in the New Freedom Initiative (NFI)--
better employment, education, home ownership, access to technology, access to community life outcomes--were the right goals for children and adults with disabilities; but
that the inconsistent involvement of disability advocates and disability policy experts in policy development and vetting key White House appointments were resulting in many
missed opportunities for collaboration in the development and implementation of policies that would support the NFI goals. Accordingly, the President has not consistently and
effectively leveraged the power of his office to follow through on his commitments to people with disabilities and their families, resulting in disjointed and haphazard implementation and approval of funds under the NFI umbrella.

Imparato cited Homeland Security Secretary Tom Ridge, Assistant Attorneys General for Civil Rights Alex Acosta and Ralph Boyd, Social Security Administration Commissioner
Jo Ann Barnhart, and New Freedom Commission on Mental Health Chairman Mike Hogan as examples of Administration officials who were collaborating well with disability
advocates; then pointed to Secretaries Martinez and Jackson at HUD; Secretary Paige at Education; and Medicaid Director Dennis Smith as examples of individuals and agencies that were not communicating regularly or collaborating effectively with disability advocates, resulting in problematic policy development in those shops.

Next, the meeting turned to a discussion of short-term opportunities for the White House to score legislative victories that would advance the NFI goals. Steve Eidelman
discussed the importance of enacting the Family Opportunity Act without problematic pay-fors; and the importance of moving away from the House version of the Individuals with Disabilities Education Act (IDEA) reauthorization, which would do substantial harm to children with disabilities if it becomes law. Anne-Marie Hughey emphasized the importance of the President working with the Congress to follow through on his commitment to enact Money Follows the Person legislation. Margaret Stout underscored the value of getting the Mental Health Parity legislation enacted, and Curt Decker discussed the Assistive Technology Act as another vehicle for advancing the NFI goals before Congress adjourns. On the technology front, Spellings encouraged the advocates to meet with David Braylor, the President's point person on technology in the health care field.

The next discussion focused on other emerging policy concerns needing attention from the White House. Imparato brought up the high incidence of brain injuries among soldiers and veterans coming back from Iraq and Afghanistan secondary to new weapons systems that were creating invisible "blast" injuries that were often going undiagnosed but creating significant long-term disability issues for soldiers and veterans. Stout discussed concerns
about state practices impacting continuity of care for dual eligibles in the context of the implementation of the Medicare prescription drug legislation. Decker brought up concerns with the FY 2006 budget process and the potential Draconian cuts that are looming for many of the programs people with disabilities and their families rely upon.

Finally, Imparato touched quickly on inadequate monitoring and lack of enforcement of the most integrated setting requirements stemming from the Olmstead decision; and the
need for bipartisan legislation to restore civil rights protections to people with epilepsy, diabetes, and other controlled conditions who have been losing discrimination cases on the grounds that they are not "disabled" for purposes of the ADA.

At the end of the meeting, the advocates emphasized the importance of having a follow up meeting with President Bush directly; as well as follow up meetings with Secretaries Paige and Jackson. Spellings committed to help get the meetings with Paige and Jackson, and indicated an interest in having Alan Gilbert from her domestic policy staff follow up with us on the issue of brain injuries among soldiers and veterans.

# # #

=====================

JOIN AAPD! There's strength in numbers! Be a part of a
national coalition of people with disabilities and join
AAPD today. http://www.aapd-dc.org
 

Cognitive Dissonance XI

Declaration of Independence

John Pistorius

I was not planning to do this project; instead it evolved out of my personal need for improvement. When I started my cognitive dissonance unraveling journey, I didn’t even know that it was cognitive dissonance that I was dealing with. My work then brought me to this writing endeavor. It is still blossoming.

I was truly upset with the way my life was going in 1996. I wanted to overcome a mountain of debt that I had amassed during the 'revitalization' of the business district where my family business was located. After a couple of years of financial security I found myself without income again. It reminded me of the period after the accident in 1983.

I felt as if my life was out of my control. As a result I was letting my thoughts get out of my control. But I didn’t realize it yet. Prior to beginning this project, I was working every day to revive our family pet shop. We lost thousands of customers by the time the construction work was finished. Always optimistic, I held on in the hope of bringing our customers back. The 'revitalization' work hurt business from the time it began. And we lost much of our customer base when the revitalization team decided to close the road through town (to replace it) for two months during the Thanksgiving to Christmas season. Most retailers depend on this time of year to carry them into the slow period of the beginning of the year. In our case we needed to have success to cover debts incurred during the sidewalk construction. It seemed as if they were trying to put us out of business.

I asked the revitalization planners to keep the road open during construction or to have the work performed around the clock. They claimed it would be too expensive to keep the road open during the removal of the entire Belgian Block road base and old trolley rails. They also claimed it would cost too much to work around the clock because of the shift differential. We business owners paid twice or more (in lost sales) for every penny they saved.

In defense of the planners, I add that I think they meant well and intended to improve the district. Of course, I could be mistaken. The end result was catastrophic. Without replacing the parking spaces eliminated by the construction, the business district has declined to levels never before thought possible.

When I started managing the business full time for my parents in 1992, with the help of my brother Ron, we managed to triple sales. I truly believed we could do it again after the construction work completed, but the damage caused by reduced parking and the disruption caused by construction and road closing was too far reaching. The people that were able to rectify the mistake by removing parking spaces and closing the road refused to admit they had made a mistake. The borough government and chamber of commerce ignored my pleas for help. To date, no effort has been made to improve the availability of parking in the district.

In response to the problem, I started a business organization in an attempt to . . .

(click here to read more)

Next time- Assembling your Army

Free Support Group Development Tools

Free Help for anyone Starting or Running Peer Groups

Contact John Pistorius at jp@pabia.org or call (412) 481-0443 to receive a free CD with the support group tools created so far. These tools can also be sent via email or postal mail.

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, July 6, 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:

• July 6

• August 3

• September 7

• October 5

• November 2

• December 7

Back to group list

The next Indiana Twp. meeting date: Tuesday, July 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:

• JULY 13

• AUGUST 10

• SEPTEMBER  14

• OCTOBER 12

• NOVEMBER 9

• DECEMBER 14

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Oakland Meeting

Held twice each month.

Monday June 14

Tuesday June 22

Meetings are held from 7-9 PM in room 5047, Forbes Tower, Meyran Street, Pittsburgh, Pa. This meeting is facilitated by a student of the University of Pittsburgh under the direction of Professor Mike Pramuka in conjunction with the TBI Model Systems Project and Professor Mike McCue.

The next Monroeville Area meeting date: Thursday, June 10, 2004

TIME: 7:00 P.M.
PLACE: Cross Roads Presbyterian Church, 2310 Haymaker Road, Monroeville, Pa.
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:

• June 10

• July 8

• August 12

• September 9

• October 14

• November 11

• December 9

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New- Indiana County Brain Injury Support Group

When: Thursday, June 17, 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
 

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NEW Swissvale Area Brain Injury Peer Support Group.

Mike and Marilyn Peters have agreed to host a new peer-to-peer support group in Swissvale. The meetings are held on the first Monday of each month 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.

Due to summer month scheduling, this meeting may be postponed for a few months. Please call in advance of attending to insure accuracy of date and time.

When: First Monday of the month.
Time: 7 to 9 pm
Topic: Peer Support Discussion
Place: Social hall of the St. John's Lutheran Church, Swissvale, PA.
Admission: Free
Parking: Free Parking on street adjacent to the building.
Contact: Marilyn Peters at (412) 271-1821

Western PA BIM / HS Recreational Bowling League

Where: Fun Fest Entertainment Center, 2525 Freeport Road, Pittsburgh, PA 15238
WHEN: Monday June 28, 2004.
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.

Upcoming Bowling Dates:

• Monday, June 28, 2004

• Monday, July 26, 2004

• Monday, August 23, 2004
   

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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 in Oakland 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 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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Till next time, Seek to be and remain Barrier-Free. You have the power.

ETC.

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