From: sabi_sue <sabisue@...>
Subject: [Traumatic_Brain_Injury] Re: What We Need/Angelrose
To: Traumatic_Brain_Injury@yahoogroups.com
Date: Wednesday, April 22, 2009, 10:04 PM

Dear Angelrose,

Yes. It is TBI also. I should explain. As far as I am concerned (and I know this may be a minority opinion in the USA, but not in many other countries), TBI is one of the ABI's. So, when I speak of ABI I am including TBI. I am also including stroke, brain illness, brain tumor, poisoning, alcohol or drug addiction, etc.

I am truly sorry that your son is not receiving more therapy. Isn't this just a travesty? The only thing that is going to help people in your son's shoes is a complete reworking of the current medical system in the USA. How old is your son? sabisue www.braininjurynetw ork.org

--- In Traumatic_Brain_ Injury@yahoogrou ps.com, "angelrose197133" <angelrose197133@ ...> wrote:
>
> --- In Traumatic_Brain_ Injury@yahoogrou ps.com, "sabi_sue" <sabisue@> wrote:
> >
> > There are so many things that we in the brain injury community need, or some ofus need. Each person has different needs, to be sure.
> >
> > Just generally speaking, I would like to say that people in our community need a full continuum of services. First, in the medical arena, start withstate-of- the-art acute services, subacute services, and rehabilitation services.(Many communities don't have any of it. Some have acute, but not the rest of it,etc.) There needs to be insurance coverage for all of these things, and for
> > long-term care where required. Also, after people move on from the immediate crisis, in many cases people need a doctor who is a specialist in brain injuryand also even a general doctor who will take Medicare (USA), Medical(California, USA), Medicaid (USA), because in many communities the doctors and clinics that will take these forms of reimbursement are few or nonexistent.
> >
> > Getting into the community reintegrative side of it, people need counseling,family support, respite care, in-home care and adult day care. Sometimes people need nursing home care, but more often they need assisted living with supports,because people don't want to stay in nursing home care. So, there needs to be appropriate accessible, affordable housing. Sometimes community supports are
> > needed such as help paying bills, going grocery shopping, paratransit, help dealing with county departments (filling out paperwork, etc., for government programs).
> >
> > People need physical therapy, cognitive therapy, occupational therapy, speech therapy, but the issue has always been who will pay for it. Vocational programs. (Society is big on that last one, anyway.)
> >
> > People with ABI shouldn't be hidden away in either nursing homes or mental health facilities, or for that matter, in jails, prisons, or under bridges because society doesn't know what to do, or really, doesn't care to pay to help our population. Yes, I mean the homeless people with brain injury, but I mean the rest of us, too. But, about the homeless with brain injury, they are in for a very tough time of it because they have no support system worth diddily squat.
> >
> > Every town needs some kind of support group for people with ABI. Oh yeah, sure on that one. (I am being sarcastic. Frankly, most of these things on the wish list have been on the wish list for years, and nobody pays for all of this stuff, so that is the problem.)
> >
> > Where there are programs operated by service providers, they must be safe programs with protocols. There must be accountability somehow to ensure our community members are not taken advantage of.
> >
> Sue you are so right on the money. but it is not just ABI TBI too. My son had a TBI 6 years ago now and MediCal pays for the supplies he needs but his therapies are a meeting every 6 months to see if there is any improvement in his range of motion. He doesnt get any regular physical therapy at all only what I can give him. unfortunately, there isnt any help for those of us who cant afford the costs
>