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October is Brain Injury Awareness Month

Inside This Issue:

• Editor's Note

• Using Your Head

• Some Responses-Physical vs. Cognitive Disability

• Toll Free Election Day Hotline-1-866-687-8683

• Our Children Left Behind -IDEA Information

• Computer Tip of The Day -Bob Osgoodby

• Picnic Today-Ed Crinnion's Extended Family Picnic

• HHS Announces Real Choice System Change Grants

• Head Injury Program -Deborah Delgado

• TBI Implementation Grant

• 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,

 

I've included some of the replies that were sent to me in response to the article, Physical Disability vs. Cognitive Disability-Is there a difference?

 

Have you responded? If not, please take a moment and send me a note with your thoughts.

 

Communication is one of the most important aspects of advocacy work. We need to be heard. And that only happens if we raise our collective voice on matters of importance.

 

Till next time-
John

Using Your Head

Communication or Lack Of…
Donna Karlin

Some Responses

 

Physical Disability vs. Cognitive Disability

Is there a difference?

 

The following responses are only a handful from those I've received. To be honest, some brought tears to my eyes, as I remembered why I do what I do. These are real people living in fear, pain and suffering every day. Not because of the injuries, though many do suffer in that way, but more from the prevailing attitudes, prejudices and treatment they receive or don't. I'm ready to do what needs to be done to help our fellow citizens with disabilities. Are you?

• John,
  Yes I do believe my cognitive impairment does absolutely equal disability in my life. I have other disabilities including a severe hearing loss, seizures and depression but the thinking ability has affected me very much. This applies to my home life and previous work life. Like so many have said, the "invisible" disabilities are SOOOOO hard to deal with because people always believe we are just fine. I always tell the misinformed to spend just one day inside my head and they will learn so much about me that it would shock them!!!!!!!!!!!!!! -Jenny

• Yes they [cognitive impairments] definitely do [equal disability].  Currently I am unable to hold down a job so I  am working for my parents who will (so far) put up with my disabilities such as remembering tasks, finishing the job etc.  Just because a person can see and walk doesn't mean they aren't disabled. -Bernie

• I am 41 years post bi. Much experience with struggling to survive with diffuse, bilateral damage, much physical pain as well as serious emotional/psychological problems which existed before 1963 when I was brain injured. I feel I have a great deal to share, and hope to help you develop and activate your programs and groups as much as I can. thank you.  -David

• I agree that our disability is "HIDDEN"- and that results in our being perceived as "WHOLE".- this is, however, a good and bad thing.  When I was recovering from my T.B.I. I was told that, if I try really hard, I could gain back as much as 80% of what I once was. ( I used to teach A. P. Physics in one of the 10 best school systems in the U.S.)- it did not happen for me, I could not remember a name- still can't.  However, continuing to try brought me back a whole lot.  Nowadays, very few people are even aware that I had a T.B.I.. -Fred

• I appreciate the thoughts that you express. A disability is a disability regardless of the extent of it. And yes cognitive impairments are disabling or can be. To look at me you would not guess that I fall into a cognitive as well as physical limitations.
  
  People confuse cognitive disabilities with poor social skills, inability to cope, slacker, whatever. The point being that because of our unique disability we are in no position to present our case. If we could we would not be disabled! -Robert

• TBI is the "Invisible Handicap", disabling but not apparent! I deal w/ the "Disabled" parking issue all the time. (As a matter of fact, the SF Dept of Parking has gotten to know me quite well, always disputing "un-earned" tickets!  -Bob
   

• I feel very strongly about this. I am fully disabled myself, yes physically and also cognitively in all areas. I have recovered a lot in some ways, yet even though I no longer need my wheelchair, cane or walker, I cannot walk like most able-bodied persons. My gait is uneven and I walk like I am drunk at all hours of the day, maybe because I broke soooo many bones in my back, pelvis, knee, lower left leg and ankle.

Cognitively, I am very much disabled as I can no longer do the complicated math I used to be able to do like algebra, trigonometry and calculus. Because I have lost so much of my cognition and also my memory I am now a 36 year old 3rd grader because I am now limited to adding, subtracting, multiplying and dividing. But don't make the numbers too big if you want the right answer.

Although I have described how I am disabled, I feel the worst way I am disabled is my memory, or lack of one. Sadly, I have no memory of saying "I do" to my husband 14 years ago, any of our time spent together, driving from Alaska to southern California with a 5 1/2 month old baby in the car that took 10 days, and any time I have spent with our four kids. The only thing I am able to remember is the excruciating pain of labor (no, I don't miss the pain at all just do remember the horrible pain.) Also, because my
brain was so badly injured I also have not regained my sense of smell at all. Yes, I know there are some things I am lucky to not be able to smell, like diapers, or feet. But I would like to be able to smell perfumes, good cooking, movie theater popcorn and the like.

So I agree with you that cognitive and sensory disabilities are indeed disabilities. I have told you how I cannot smell anything at all and still to this day worry that if there was a fire or dangerous gas, I probably wouldn't be able to smell the danger. -Leanne

• Hi John,
  
  Your posting brought tears to my eyes. Of course I feel discriminated against...I live in Pennsylvania too. I'm not being discriminated against by OVR, just every where else. What can I do to help build a coalition of the disabled? Why are we at war?
  
  I have questions too, like why do you think the physically disabled dismiss cognitive disability in the first place? My guess is that lack of funding for disability services fuels this antagonism and then there is the competition for limited jobs...
  
  I would like nothing better than to help all of us who struggle with
  broken brains to be recognized as a population that needs help. I've gotten lost in train stations-asked for help and ignored. I look fine. When I lose my balance-vestibular problems-people joke about my drinking and I'm not drinking. -Hildy

• I agree with you 100%. We need to stand up now and be heard, our disabilities are no less important than someone who has lost limbs or suffered from strokes. I am currently waiting for a date before an administrative law judge on my disability claim because my claim was denied at the first level. I refuse to let paper pushers dictate weather or not I am entitled to collect the disability that I paid into. I will fight for what is rightfully mine. I did not ask to be left with cognitive disabilities from my injuries and I am doing everything I can to continue to recover from the life changing TBI I was inflicted with nearly 3 years ago. Just because you can't see my disabilities doesn't mean I don't have them. -Donna

• Just because you can't see our disability does not mean we do not have problems in life. There is injustice in this system of ours and it is wrong. Please feel free to give me feed back. -Tommy

• John,
  
  To me, it is plain that both the physical and cognitive disabilities can affect daily living. They are, of course, different and affect different aspects of life.
  
  There can be overlap of the two; but one should not denigrate the other.
  
  If someone tries to say that only a visible disability is legit or acceptable, how do they define "visible"? Visible to anyone, as in a broken back where the part will not move, or asthma, where you would need some sort of medical device to see the scaring of the lungs? What about cancer or heart problems, where a medical test is needed to prove the condition? Some BIs can be seen with a PET, but not all; so should only BIs visible on today's PETs be allowed? What about in 1-5 years when scanning is more sensitive and an OK PET scan today shows damage with the newer technology?
  
  Food for thought. But, you asked for it! -Janet

• Good morning John,
  I was scanning through the hastypastry forums (John Lester's) and I noticed the title of your comment. Your posting is quite powerful. (You might also be interested in posting the same comments in the Philosophy of chronic illness forum- only because there are more visitors to that forum. Do not be surprised if someone considers your posting to be of political nature. I do not!)
   

  As you know, the obvious problem is that people with cognitive disabilities have a much harder time representing themselves. To use your frame of reference it is like telling someone who cannot walk that in order for him or her to represent herself she needs to walk a marathon. For a lot of people who are cognitively disabled the very thought of representing themselves is simply not there. They need an advocate. In our society we have done a great job of equating our sense of self with the "mental". As soon as there is any mental deficiency then it becomes a "self-deficiency". I think that this is important because it really does come to the definition of a human being. In the same way that a physically disabled person can say that s(he) is no less a person because he or she does not have a leg, society must be able to say the same thing in the case of a person with a cognitive disability. This is a case of being vs. functioning. Society has to be re-educated on this point, I think.
   

  I am sure that you also know that the forum you posted on (hastypastry) is a neurological forum. I am sure that you also know that so many neurological disorders carry cognitive disabilities. For example, if your scroll through some of the forums (Parkinson's) you will note that a large percentage (20-30% can develop dementia). Some forms of migraine have severe cognitive deficits. I can keep going but the point, as you know, is that the days of separating the physical and the mental is slowly coming to an end in the scientific community. As of 50 years ago depression was considered to be a personality flaw. 700 years ago it was considered to be one of the deadly vices. Now we believe that it has a physical basis. (I know that it is not this simple but I hope that you get the point.)
   

  I could keep going but my mind is slowing down really fast. Why? Because I am one of these cognitively disabled. My disability, whatever it is, seems to be episodic but progressive. I have several degrees, including a graduate degree. I have seen every type of specialist and I still have no diagnosis. The only thing that they can tell me is that I am not faking this; it is getting worse; they do not know what is happening.

All the best with your cause. You represent a silent (at times embarrassed) members (and their families) of society. -Sincerely, Matt

• Hi John;
  I look normal on the outside but I'm not. As you know by now I suffer from seizures, and I do suffer a great deal of abuse from people including my own family. However I do work part time as a pc tech, but I'm able to hide and do the work from my residence.
  People are very cruel, they say I am crazy because I have seizures...so I stay inside as much as possible. -Sheila

• I am ready to advocate for individuals with brain injury. It seems all other "illnesses" and "conditions" advocacy groups are much more organized and and information more readily accessible than with brain injury. Everything I have learned was frankly by divine intervention. I would not have known what programs are out there otherwise. And even with waiver programs, the waiting lists are long.  People with brain injury need much more help, especially from the insurance companies. I would love to see day programs funded so that individuals like my son, could go to get more therapy and help with his disabilities and frankly just to get him out of the house for more stimulation and socialization. I think time in rehab hospitals should also be longer than 3 weeks. And I would love to see terms like "medically necessary" and "plateaued" eliminated. Yes, please keep me posted. -LJ

Computer Tip of the Day
Bob Osgoodby

Spyware

With the growing safeguards being made available to fight
unsolicited email, the spamsters are turning to spyware. Spyware
is Internet jargon for Advertising Supported software (Adware).

It is a way for software authors to make money from a product,
other than by selling it to the users. There are several large
media companies that offer them to place banner ads in their
products in exchange for a portion of the revenue from banner
sales. This way, you don't have to pay for the software and the
developers are still getting paid. If you find the banners
annoying, there is usually an option to remove them, by paying
the regular licensing fee.  The email client "Eudora" is a good
example of this.

Adware (spyware) can arrive on your computer from many sources,
but does so primarily from software you may download from the
Internet. It may even be bundled into software that you buy.

So _ What are the symptoms of adware?  If you suddenly find that
your "Home Page" has changed and when you sign on the Internet,
you are taken to a different site.  If 'pop-ups" start appearing
on your system when you are not connected to the net, you are
infected. If you see unusual activity on your computer when you
are connected to the net, odds are that spyware is sending
information from your system about you to someone.

Why does Spyware and Adware affect every internet user?

* All information you enter via the web can be intercepted
* Unauthorized sites can add themselves to your desktop (icons)
* Unauthorized sites can add themselves to your internet
  favorites
* Your browsing activity can be tracked and monitored
* Unwanted toolbars and searchbars can attach themselves to your
  browser without your knowledge or approval
* Your personal information can be sold to other parties without
  your knowledge or consent
* Your default homepage and settings can be hijacked so you can't
  change them
* These malicious components not only invade your PC so they can
  not be removed, but take up your hard drive space and slow down
  your PC!

How do you get rid of it?  There is a basic problem here.  The
software that you got, actually generates the code for the pop-up
ad presentations.  Software is available that can find the actual
pop-ups and eliminate them.  But the software that is generating
the ads is still there.  When you remove them, it simply
recreates them.

I purchased "Spyware Nuker" which I thought would find and remove
spyware on my computer.  Much to my chagrin, I found that the
amount of pop-ups increased by a measurable amount.

I then downloaded (free) "Ad-Aware" from Lavasoft and it found
the spyware and removed it.  Next day they were all back again.

Thinking about this, the only software I had downloaded recently
was "Spyware Nuker" (that was when the trouble started) and
Ad-Aware. I uninstalled "Spyware Nuker", ran "Ad-Aware" and guess
what - all my problems went away.

I do recommend "Ad-Aware" you can get it free at:
http://www.lavasoftusa.com/ - click on "Ad-Aware Personal"

                               Bob

 

Bob has been publishing online since 1996. You can subscribe to his Tip of the Day or other newsletters by visiting his web site at:

http://adv-marketing.com/business/subscribe2.htm
 

 

(Editors note: I've been using the free version of AD-Aware for almost two years now. It thoroughly seeks and destroys this type of menace each time I use it. I run it about once each week to clean my hard drive of spyware and pop-up ad type problems. I've helped others 'clean' their computers and found hundreds of insidious little files that reduced their computer's effectiveness.)

"HHS Announces Real Choice System Change Grants"

A New Release from the United States Department of Health & Human Services, www.hhs.gov:

Tuesday, Oct. 5, 2004 
Centers for Medicare and Medicaid Services Media Affairs
(202) 690-6145

HHS Awards $31 Million in Grants to 31 States to Help
Individuals with Disabilities and Older Adults

HHS Secretary Tommy G. Thompson today announced $31 million in grants to 31 states to help people with disabilities or long-term illnesses live in their homes and participate
fully in community life.

"People with disabilities want access to high-quality
services in the community they call home. These grants will
help give them the independence to live at home and
contribute to their communities," Secretary Thompson said.

The grants are a part of President Bush's "New Freedom
Initiative," which promotes the goal of community living
for individuals with disabilities and long-term illnesses.
Under this initiative, which began in 2001, 10 federal
agencies work with states and community organizations to
remove barriers to community living.

"We are committed to removing the barriers preventing the
54 million Americans living with disabilities from leading
full lives. These grants will help those living with
disabilities make their own choices on what services they
get, who provides those services and how and where to
live," said Centers for Medicare & Medicaid Services
Administrator Mark B. McClellan.

The grants awarded today help states and other eligible
entities improve their home and community-based services
programs. A total of 52 grants were awarded in nine
categories:

1. Quality assurance: Approximately $4.3 million to nine
states (VT, NJ, NE, AR, AZ, FL, NH, MA, AK) to support
quality assurance and quality improvement in home-and
community-based services. The programs identify key quality indicators through input from consumers, family and other stakeholders.

2. Integrating housing needs with other support systems:
Approximately $6.7 million to eight states (NH, OR, PA, NC,
DC, MS, VT, AR) to help coordinate housing with other long-
term support needs. Housing models include foster group
homes, affordable assisted living, supportive public
housing, homeownership assistance, and community-based
apartments.

3. Screening, assessment and transition from children's
services to adult services: A total of $1 million to
Nebraska and the District of Columbia to support innovative
practices in home- and community-based services for people transferring from children's services to adult services.

4. Reform of long-term support systems: A total of $7.6
million to support Wisconsin and Vermont's efforts to
further reform their long-term support systems. Wisconsin's
wide-ranging reform includes planning grants to support
local partnerships, "virtual resource centers" to provide
information to individuals, and a multi-media campaign on
financial planning. Vermont plans to integrate the
financing and delivery of acute and long-term care services
for older individuals and individuals with physical
disabilities.

5. Mental health systems reform: Approximately $3.3 million
to 11 states (MA, NH, OR, MN, OK, NC, ME, VA, DE, PA, OH) to support consumer-directed, evidence-based practices such as illness management and recovery, assertive community treatment, and peer support programs.

6. Rebalancing initiative: Approximately $2 million to
seven states (IL, LA, ND, NC, MS, VA, TN) to help states
prevent and correct inappropriate placement of individuals
in institutions. Interventions include: development of
single points of entry for individuals who are at risk of
institutionalization, a coordinated transportation system,
and comprehensive client assessment instruments and
procedures.

7. Living with Independence, Freedom, and Equality (LIFE)
account feasibility and demonstration: Approximately
$200,000 to Wisconsin and New Hampshire to study the
feasibility of establishing a savings program for children
and adults that would enable them to control their own
Medicaid-funded community-based services.

8. Family-to-family health care information and education
centers: Approximately $1.5 million to private, not-for-
profit entities in 10 states (NY, AZ, NC, MA, UT, WV, LA,
KY, NM, ND) to develop and implement an information and
referral network for parents of children with special
health care needs.

9. National State-to-State Technical Assistance Program for
Community Living: Approximately $4 million to the
Independent Living Research Utilization program in Texas to
continue a program of individualized technical assistance
to all grantees as well as resource development and
information dissemination to benefit all grantees under the
New Freedom Initiative.

Additional information is available at
http://www.cms.hhs.gov/newfreedom/accomplish2.pdf.

For more information on the New Freedom Initiative, visit
the CMS Web site at
http://www.cms.hhs.gov/newfreedom/default.asp.

[For a listing of grant recipients, visit the HHS press
release online at
http://www.hhs.gov/news/press/2004pres/20041005a.html.]

Note: All HHS press releases, fact sheets and other press
materials are available at http://www.hhs.gov/news.

# # #

Just Remember this: Love is a verb.