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BirdeR
03-05-2002, 07:53 AM
Help coming for paralyzed gymnast


Richard Reeve
Eyewitness News Investigator

MARION COUNTY, Feb. 14 - After the story about Nicole Richards aired, there was an outpouring of support for the former Perry Meridian High School gymnast. Help may be on the way to guide the Richards family through a state Medicaid bureaucracy.



It is the images of Donna Richards caring for her paralyzed daughter Nicole that prompted Shannon Ulrich to come forward. "Knowing she's traveling back and forth and the rest of her family's suffering for it too. Those other kids don't get to see their mom. It was just sad."
Nicole, paralyzed in a car accident two years ago, needs her mother more than ever. "I have to depend on her to get me up, I have to depend on her to, you know, pretty much everything."
That means a nearly every day 90-minute commute for Donna from her south side home to get Nicole ready for her day.
Donna Richards says she's trying to get help to pay for a nurse's aide for Nicole, but says Medicaid and its providers are giving her the run around. "Basically, (the most frustrating part is) that I can't get no answers."
Ulrich, a former doctors' billing agent, says she knows all about that bureaucratic brick wall. "It should be better communication. Or maybe one person would be the contact person. Then they could find all the other information for everybody."
She and other friends in the Muncie medical community have come up with a plan. They'll volunteer their own time to help the Richards. But a more permanent solution may be on the way.
"Hopefully, we can staff for her 100 percent, but I'm not sure we can," says Jean McDonald of the Indiana Association of Home and Hospice Care. The association says it will search for a Muncie-area provider for Nicole, if the group can find the people to do the job. "With our shortage of both home health aides and nurses, the industry's in real dire straits," says McDonald.
Meantime, folks like Lawrence Township firefighter Jeff Muszar are volunteering too. "It touched me, that what would I do if I was in that spot? Would I have the strength, the ability to do what that mom has done?"
Muszar may use political muscle to help. "We want to be an advocate for her to the state government through our unions, to see if we can get the government to step up and do what's right, first of all."

PART ONE
As a young gymnast, Nicole Richards had dreams of Olympic glory. "Before the accident I thought I was strong and I could do all kinds of things." But carrying the Olympic torch down Meridian Street is probably the closest she'll ever get to the Olympic experience.
"Her determination is beyond most people's comprehension," says family doctor Carol Dickhaus. "But she has a body that by all standards is not going to work for her."
It's not been an easy road for Richards, paralyzed from the chest down in a car accident two years ago.
But while Richards works to rebuild her life her mother Donna also faces an Olympian challenge.
The day starts at 5:30 for Donna Richards. She's a single mother caring for two young children at her home on the far south side.
At 6:42 she's out the door on her way to Ball State University where Nicole, a sophomore, needs her help. It's a 90-minute drive one way, and Richards has to make it nearly every day, sometimes twice a day.
Nicole has to depend on her mom "to get me up, I have to depend on her to, you know, pretty much do everything.
At 8:15 Donna is at the dormitory ready for the demanding work of preparing Nicole for the day. "Morning, sunshine."
"It takes two hours to do a shower, and to put her into a chair, take her down the hall, give her a shower, bring her back, get her dressed, get her off to class."
A quick hug and Donna heads back home, more than four hours after her day started.
Later, there's a good chance she'll make this trip again to get Nicole into bed for the night.
For Donna, the most frustrating part of this is "Basically that I can't get no answers."
For six months now, Richards has been trying to get help to pay for a nurse practitioner to work with Nicole several hours a day. But all she gets from state Medicaid and its providers is the run-around.
Meanwhile, she barely sees her other kids and can't even go back to work to support them.
That's right. Donna Richards hasn't been able to work at all since the accident. Between the trips back and forth to Muncie and the demands of her younger kids, there's simply no time. As a result, the family has to rely on food stamps and state health insurance.
Donna feels, "like I'm using the state system when I don't need to. I mean, I want to go to work, but I can't 'cause I gotta take care of her."
She says the way things are now, taxpayers are needlessly subsidizing her and Nicole. "It's costing them more money to have me on food stamps and me and my other two kids on medical insurance than it would be to pay an agency or a private nurse ten hours to take care of her."
Nicole just doesn't "understand. I mean, they have all the proof." Paperwork proof that has taken over Donna Richards' kitchen, as she's made hundreds of futile calls to state officials and Medicaid providers. "I've gone to the caseworker. He sent me to different people. I go to them people. They send me to people. I'm just in a circle with no answers."
Even a letter of support from Nicole's doctor didn't have any effect. Dr. Dickhaus wonders how long Donna Richards can keep this up. "This woman is going to wear out on one end or the other. And then she won't be able to work."
Nicole knows the affect it's having on her mother. "I mean it's wearing her down. She's getting sick, and I can't imagine driving back and back and forth. And having to deal with the rest of the family."
But Richards vows not to let her daughter down, no matter the toll on herself. "She's not going to live a full normal life like we expected her to live, so I'll do whatever I have to do to get her through whatever she wants to get through. With or without help."
State officials say Nicole is eligible for Medicaid, but needs to find a provider to send them the right paperwork.
In all her phone calls, Donna Richards says she never heard that.
And she's contacted a number of providers who won't help.
Now, the state says it has referred her case to an advocacy group that may be able to get things on track.
Nicole's father helps out financially, and so do her grandparents who live across the street.

http://sci.rutgers.edu/forum/images/smilies/confused.gif http://sci.rutgers.edu/forum/images/smilies/mad.gif http://sci.rutgers.edu/forum/images/smilies/frown.gif

marmalady
03-05-2002, 10:47 AM
What state is Marion County in? The article doesn't make very clear what the denials are based on; this mom needs to say 'no I won't talk to anyone else' to her caseworker. Or, she could possibly go through the 3-week training program for home health aides herself, and sign on with an agency that will assign her exclusively to her daughter. At least that way, she'd be getting paid.

In terms of general caregiver inavailability in general, this is what we've experienced:

-help available, but only daytime, weekday hours.
-help available, but grossly unqualified (don't get me started!).
-private help available to the tune of $25/hr.
-private help available, but they steal from the client.
-help unavailable due to shortage of aides in the state, due to a crackdown on criminal records by the state, causing the firing of I believe over 3000 aides in New Jersey.
-help unavailable from new PSA program in the state for some arcane reason I'm not even sure of.


I'm sure the rest of you could add to the list with your own experiences.

_____________
Tough times don't last - tough people do.

TD
03-05-2002, 02:27 PM
There are lots of states in the midwest with a Marion County. From one reference (...Muncie medical community...) I would venture a guess that these people are in Indiana.

"And so it begins."

FREEJ
03-07-2002, 01:05 PM
TD, I wish i had something more constructive to say than, ''it's a F'G shame, and it makes me livid.'' Bad enough the ''med/gov system'' JERKS us around royally with the cure issue. But it's a ''PUTRID DISCRACE'' that in 2002, toooo many sci cannot get decent hepl/care.

TD, you can throw the NJ-home care system in with Marion Cty.

Marmalady,,,''Don't get you started.'' Does it sound like i found any or a minimully decent aide yet,,,, http://sci.rutgers.edu/forum/images/smilies/frown.gif . Marm i just spent my afternoon on the phone touching base w/ my ''nursing agency'' roledex,,,only to hear ''sorry nothing yet, and one or more of the points you've stated.'' I may be e/m'g you soon.

TD
03-07-2002, 04:04 PM
I waited seven months for someone to come and help me get into the shower before I had my roll-in shower installed. I finally got the word that "...no one wants to come to your house...". http://sci.rutgers.edu/forum/images/smilies/eek.gif http://sci.rutgers.edu/forum/images/smilies/confused.gif http://sci.rutgers.edu/forum/images/smilies/mad.gif It's not like I have a difficult care routine!! I finally gave up and now my wife takes the time to help me.

I have since learned:

1) There is a SERIOUS shortage of nurses and nursing assistants in this country.

2) Those that are in the field are not paid enough for the work they do.

3) As a result of 1 & 2, if you do find someone you wind up with someone who is so overworked their work performance is sloppy and dangerous.

"And so it begins."

joseph
03-07-2002, 06:48 PM
Medicaid won't pay a family member even if they have their CNA licence. My son tried it but the agency said if medicaid found out he was caring for a family member they'ed be breaking the law.We still don't have a nurse aid.

marmalady
03-08-2002, 04:01 AM
Hi, Joseph - Good to hear from ya! I guess it's a state-to-state thing, because we were offered it in New Jersey, that I go to the aide training program, sign on with an agency with the understanding that I would be 'assigned' to Matt only.

_____________
Tough times don't last - tough people do.

KLD
03-08-2002, 03:31 PM
Attendant programs are totally state run, and are not governed under Medicaid regulations. Each state makes their own rules. In California, under the IHSS program, not only can you hire anyone to be your PCA (you do not need to use an agency or a CNA or HHA), you can "hire" family members. They do dictate how many hours you get though, and it is often pretty arbitrary and rarely enough to cover all your care needs.

Just keep in mind that the pay is VERY low, and in most states there are absolutely no benefits. This is another reason that it is hard to get people to do this kind of work. If they work full time at McDonalds flipping burgers they at least get paid health insurance, workers comp, SS, etc.

If you are lucky enough to find a good attendant, hold on to them (and treat them very well). After going through a bunch of loosers, we found a great one for my mother. I wish we could clone her for all of you!

exhale43
05-26-2002, 03:45 PM
We live in Pennsylvania and my husband gets attendants through the a state welfare program [Community Resourses For Independence] They do not pay family members. We have had hard time's finding attendant's there is an attendant problem here a shortage. They pay $8.16 hr here and we get 51hrs a week .We where lucky enough to find some one for days . Evening is still up for grabs yet It is very hard to find some one who really like's doing that kinda work

cowboyquad
07-05-2002, 11:49 PM
Maybe the law is different in VA and that sucks but here in Montana a family member can be a paid caregiver through the medicaid self-directed personal assistant service as long as the person receiving the care is over the age of 18. I'm not sure if the same applies with the agency based services though.

bthesing
07-14-2002, 11:31 PM
I live in Orange County, California and I was told to call our Senior Center to find a Caregiver, so I could be relieved once in a while. I was also told that most of them want $14 an hour. I am hoping the VA, where my husband is now, can come up with a better solution. Sounds like caregivers are harder to find then babysitters. I want my husband to do as much as he can for himself, before he comes home.

Chris Chappell
07-15-2002, 12:01 PM
Countrygirl, what's your husband's level of injury?

I couldn't find it on your profile?

Depending on injury level will have a direct correlation as to how much care he may or may not need.

Onward and Upward!

ParaDude
07-16-2002, 10:20 AM
...we live in a society that cares more about the mighty dollar than it does about people in need.

whiterabbit11
07-16-2002, 09:41 PM
ParaDude hit the nail on the head with his short answer!. Just like the Brian Hipple cluster----.There has to be a mass media marathon to get attention.If you're not self reliant you'd better have a big pile of $. WR