Tanya in NY-
Question for you! I was told in NY BPI didn't qualify as a disability so he couldn't get a medicaid waiver. Is this not true? Please email me privately - would love to discuss with you! aidansmom311@yahoo.com
childcare assistance
-
Carolyn J
- Posts: 3424
- Joined: Tue Apr 06, 2004 1:22 pm
- Injury Description, Date, extent, surgical intervention etc: LOBPI. I am 77 yrs old and never had a name for my injuries until 2004 when I found UBPN at age 66.
My injuries are: LOBPI on upper body and Cerebrael Palsy on the lower left extremities. The only intervention I've had is a tendon transplant from my left leg to my left foot to enable flexing t age 24 in 1962. Before that, my foot would freeze without notice on the side when wearing heels AND I always did wear them at work "to fit in" I also stuttered until around age 18-19...just outgrew it...no therapy for it. Also suffered from very very low self esteem; severe Depression and Anxiety attacks started at menopause. I stuffed emotions and over-compensated in every thing I did to "fit in" and be "invisible". My injuries were Never addressed or talked about until age 66. I am a late bloomer!!!!!
I welcome any and all questions about "My Journey".
There is NO SUCH THING AS A DUMB QUESTION.
Sharing helps to Heal. HUGS do too. - Location: Tacoma WA
- Contact:
Re: childcare assistance
Jordan1 and other Mom's...I copied and pasted this from the Adults and Teens with OBPI Forum Mesage Board. I hope this is helpful information~~HUS, Carolyn J(LOBPI/69)
*************************
Re: Filing for SSD / SSI Question from UBPN Please help
Posted: Jan 18, 2007 7:57 PM Reply
Dawn I copied and pasted this from an old post.
SSA- Disability new factsheet BPI
Posted: Mar 10, 2006 2:44 PM Reply
new ssa fact sheet on bpi
njbirk Posted: Mar 10, 2006 8:04 AM
I shared with you all some time ago that Kathleen Mallozzi and I attended a Policy Conference with the Social Security Administration as they are revising the Guidelines for disability. This meeting was in July of last year.
Here is the link for the new fact sheet on bpi. Just having the fact sheet is critical (BPI was not included in the listings at ALL before. Instead we had to piece together our injury from the listings of other neurological injuries).
http://policy.ssa.gov/POMS.NSF/lnx/0424580030
The old listing placed disabilty decisions based soley on limitations in TWO extremities and we explained that, instead, for bpi, severity and extent of injury in ONE, should be sufficient for disability. If you read through the fact sheet, you will find these words:
"Marked limitations in any two of the domains, or extreme limitation in one, mean the impairment functionally equals the listings."
Nancy Birk
UBPN President
======================================================
Re: new ssa fact sheet on bpi
Kath Posted: Mar 10, 2006 9:31 AM
Nancy
This change make all our work worthwhile.
I am so excited!
We left this conference feeling positive.
I assumed it would be a very long time before we would see the results of the positive feedback we received there.
This is HUGE we (UBPN) made a change on a National Level.
This policy will support bpi people when dealing with SSA.
I was also pleased to see the opening statement where they acknowledge UBPN.
"Most of the following information on brachial plexus injuries (BPI) was originally prepared in collaboration with the United Brachial Plexus Network (UBPN), and presented in a Factsheet that was distributed in an administrative message. This information pertains primarily to infant birth injuries, however, much of it is also relevant to adults and older children who sustain BPI injuries. For more detailed information about BPI, and the latest developments in this specialized field of medicine, visit the UBPN website at ubpn.org and the National Institute of Neurological Disorders and Stroke?s BPI page at http://www.ninds.nih.gov/disorders/brac ... plexus.htm. "
I am doing the bpi happy dance....
Kath ( adult/robpi)
*************************
Re: Filing for SSD / SSI Question from UBPN Please help
Posted: Jan 18, 2007 7:57 PM Reply
Dawn I copied and pasted this from an old post.
SSA- Disability new factsheet BPI
Posted: Mar 10, 2006 2:44 PM Reply
new ssa fact sheet on bpi
njbirk Posted: Mar 10, 2006 8:04 AM
I shared with you all some time ago that Kathleen Mallozzi and I attended a Policy Conference with the Social Security Administration as they are revising the Guidelines for disability. This meeting was in July of last year.
Here is the link for the new fact sheet on bpi. Just having the fact sheet is critical (BPI was not included in the listings at ALL before. Instead we had to piece together our injury from the listings of other neurological injuries).
http://policy.ssa.gov/POMS.NSF/lnx/0424580030
The old listing placed disabilty decisions based soley on limitations in TWO extremities and we explained that, instead, for bpi, severity and extent of injury in ONE, should be sufficient for disability. If you read through the fact sheet, you will find these words:
"Marked limitations in any two of the domains, or extreme limitation in one, mean the impairment functionally equals the listings."
Nancy Birk
UBPN President
======================================================
Re: new ssa fact sheet on bpi
Kath Posted: Mar 10, 2006 9:31 AM
Nancy
This change make all our work worthwhile.
I am so excited!
We left this conference feeling positive.
I assumed it would be a very long time before we would see the results of the positive feedback we received there.
This is HUGE we (UBPN) made a change on a National Level.
This policy will support bpi people when dealing with SSA.
I was also pleased to see the opening statement where they acknowledge UBPN.
"Most of the following information on brachial plexus injuries (BPI) was originally prepared in collaboration with the United Brachial Plexus Network (UBPN), and presented in a Factsheet that was distributed in an administrative message. This information pertains primarily to infant birth injuries, however, much of it is also relevant to adults and older children who sustain BPI injuries. For more detailed information about BPI, and the latest developments in this specialized field of medicine, visit the UBPN website at ubpn.org and the National Institute of Neurological Disorders and Stroke?s BPI page at http://www.ninds.nih.gov/disorders/brac ... plexus.htm. "
I am doing the bpi happy dance....
Kath ( adult/robpi)
Carolyn J
Adult LOBPI
Adult LOBPI
-
Tanya in NY
- Posts: 935
- Joined: Mon May 03, 2004 10:51 am
- Injury Description, Date, extent, surgical intervention etc: I am Mom to Amber, injured at birth. I serve on the Board of Directors for UBPN, and am a labor/delivery nurse, too.
- Location: NY State
- Contact:
Re: childcare assistance
Aidansmom311---
I just emailed you.
Tanya in NY
Amber's Mom, ROBPI, 5 years old
I just emailed you.
Tanya in NY
Amber's Mom, ROBPI, 5 years old
Tanya in NY
Amber's Mom, ROBPI, 13 years old
Amber's Mom, ROBPI, 13 years old