Budget Cuts Will Hurt ALS Patients

So I feel like I can breathe again.  My friend Maddy finally poured a bucket of freezing water in my face, as she always does when a lot of time lapses between blog posts and yells at me [in capital letters, of course] "GET YOUR FINGERS ON THOSE KEYS!". I just lose  track of time. So much to do in a day, and I get fatigued, so I have to take breaks and naps.

I was as committed as ever,  to helping out the widespread effort to get in our legislators' faces to oppose NY State's Governor Cuomo's "Medicaid Re-Desgn Plan" and the part I was most concerned with, was the threat to the CD-PAP [Consumer-Directed Personal Assistant Program].  Briefly, the CD-PAP is a system whereby the client/patient ges to hire, fire, and schedule her own home care staff, and each week submit a time sheet to an agency [mine is called "Concepts of Independence"] which administers payment and benefits -- medical insurance,paid vacation, and sick-time as well as holidays for the aides.

As those of you know, who have followed from the beginning of my blog on Caring Bridge, I had nightmarish experiences when I got my aides from the largest home-care agency in the country, the one whose commercial tagline is "We bring the caring home".  For those of you who don't know, or forgot, let me recap.  I had aides who snored so loud, my apartment shook, and I was robbed of money, a brand-new digital camera [which has never been replaced since 2006], and other things.  When I complained to the agency, I was told there was nothing they could do, because I didn't have proof.  Then, I got four aides I really liked, who became my regulars.  However, when one of my regulars became sick or went away, the agency refused to let one of my other regulars fill in.  They insisted they had a team of aides who did fill-ins, and they would get "mad" if they sent one of my regular aides to fill in.  Absolutely no concern for the patients' [my] well-being and comfort. So ever time one of my regulars took off, I had to deal with an aide who didn't know anything about my disease.  One called her office within full earshot of me, yelling at her supervisor "Don't ever send me to this patient again!  She's too much work!"

And the nurse they sent every week!  Aside from telling me that I wasn't working hard enough at getting better [huh?] and "playing helpless", she began to tell me every week "I am having trouble finding a long-term care agency for you.  No one wants to take your case because it's too difficult and you are lazy.  You should be better by now". One day I asked her "How much do you know about my disease?", to which she responded "I know all I need to know".  When the agency called me and said I was harassing the nurse and they would have to change my aides, I could take it no more.

My good friend Norma, who has ALS and was a nurse at St. Luke's Hospital for more than 30 years, happened to now the head nurse at this huge agency, wrote a scathing letter, and I received apologies from the aide supervisor and the nurse.  But I had already filed my application for my case to go to the CD-PAP, which was finalized a couple of weeks later, to the shock of the agency.

We must preserve the CD-PAP! It is a freedom of choice that is so indispensable to people with disabilities, and especially for ALS patients.  ALS is such a misunderstood disease, about which so much of the home care, nursing, and even medical establishment is so ignorant.  It is so essential that ALS patients be able to fire, hire, and schedule their own aides.  We need to train a team of aides about our needs and the idiosyncracies of our condition, and not have to deal with different and unfamiliar people all the time.

If your state doesn't have a CD-PAP, we must all fight for this important system.  And now I am engaged in letter-eriting and emailing and social networking in another fight.  On a national level, we must fight the effort to eliminate Medicare for people with disabilities and replace it with a voucher system, and to eliminate Medicaid altogether.  If you are not already my friend on Twitter and/or Facebook, please connect with me.  In the coming weeks, I will send updates to Facebook and Tweets to Twitter about NY's fight [which is not over yet] and the national situation [which is only just beginning].  If you are already on home care, you will be scrutinized.  ALS patients have more hours of home care, because we need it.  There are recipients who don't need the hours they have, and tons of abuses.  They should leave ALS patients alone.  I am told they will be very closely looking at issues like caregivers living with patients, and patients living with family members that Medicaid deems should be caregiving.  We all know how unfair this is.  It is extremely intrusive and taxing for some family members to be taking care of ALS patients while trying to live their own lives.

I can guarantee that a voucher system will not work, and will force ALS patients to sacrifice essential things like equipment and specialist's visits.  We must fight along with ALSA and MDA.  If you are in NYC, get on the Yahoo group DNNYC [Disabled Network of NYC] and, if you can, go to monthly meetings of DIA [Disabled in Action], because we need a bigger presence in the larger disability advocacy movement, which encompasses everything from mental disabilities and ADD to blindness and deafness, as well as other muscle diseases.