Palin’s Health Care Priorities and Alaska’s Daughters
15 07 2009Today, Lisa Demer of the Anchorage Daily News has broken a story that adds another scandal to the growing list of scandals that have plagued this administration, and shines the light on Alaska’s very own health care crisis. Demer’s story centers on the horrendous condition of the Alaska’s state programs that are designed to help its most vulnerable citizens, the elderly and disabled.
The situation is so bad the federal government has forbidden the state to sign up new people until the state makes necessary improvements. [snip]
The moratorium is expected to last four or five months. State officials estimate about 1,000 Alaskans will be affected.
A particularly alarming finding concerns deaths of adults in the programs. In one 2 1/2 year stretch, 227 adults already getting services died while waiting for a nurse to reassess their needs. Another 27 died waiting for their initial assessment, to see if they qualified for help.
No other state in the nation is under such a moratorium, according to a spokeswoman for the federal Centers for Medicare & Medicaid Services.
There are currently eight lawsuits pending against the state which also rang alarm bells on the federal level.
Doctors and other health care providers wrote to the Centers for Medicare & Medicaid with concerns that the state wasn’t responsive. Some alleged that the lack of state controls “has resulted in the death(s) of the active clients,” the federal review said.
While the people served are frail and suffer from chronic health issues, the state never investigated to determine if any failure in service contributed to the deaths, the federal review found.
“Thus, if someone passed away because a (personal care assistant) did not show up, for example, there was no indication this would have been reported or investigated,” the report said.
The state plans to start doing fatality reviews.
The state plans to start doing fatality reviews?
So, it would appear, since we are the only state where the situation is bad enough to require federal intervention that the administration has had its mind on other things. We know, of course, that the governor has been busy with her farewell tour, flying all over the state and signing bills and doing little shout outs and quotes of the day on her twitter account, and getting ready to become a full-time celebrity.
But what about health? What have been, and what currently are the administrations top priorities on matters of health and human services? It’s obviously not the care and well-being of our vulnerable seniors, so what is it?
The administration is spending an awful lot of time on the upcoming ballot initiative that will address parental notice and consent for anyone under the age of 18 who is seeking to terminate a pregnancy. Here is the initiative language with recent changes in language underlined. parental20involvement20initiative1
Two years ago, the Alaska Supreme Court on a 3-2 ruling said that a parental consent law was unconstitutional because it transferred the right to make such an important decision to a parent or a judge. They also stated that a parental notification law, however, might be constitutional.
Although she stated she’d like to take this on personally, Palin, under the advice of her attorney, took a step back.
“I got a preliminary opinion from Law (Department) just giving me a heads up that critics would certainly file an ethics charge against me if I were to sponsor an initiative,” she said. “So though I maintain I have First Amendment rights just as any other citizen does, I won’t flirt with the notion of giving critics more ammunition to keep filing wasteful ethics charges against me, but instead I’ll volunteer to be the first signature.”
There go those critics again, demanding ethics. And there goes the governor again, not quite understanding the first amendment, or the ethics act.
Planned Parenthood, recognizing that a girl who doesn’t want to tell her parents she’s pregnant, or fill out paperwork to get time off from school to go stand before a judge in superior court and convince him or her that she is mature and intelligent enough to make decisions about her own reproductive health, might just take the situation in to her own hands.
Girls researching self-induced abortion on the Internet could find all kinds of bad advice, said Clover Simon, Executive Director of Planned Parenthood.
In the week prior to Sarah Palin’s hurried announcement that she’d be stepping down as the governor of the state, a new scandal was brewing on the horizon. It didn’t get as much publicity as some of the other numerous Palin scandals, in part because everyone became preoccupied with her resignation.
The fact that a frightened teen who doesn’t want to become a parent might do what others have done and just try to Google her way out of her predicament may have crossed the mind of Beverly Wooley, the state’s public health director, who was scheduled to appear before the legislature on this issue. She stated, earlier this month that she was forced out of her position, largely due to differences between her and the governor on the parental involvement issue.
Wooley said she also intended to answer questions from legislators and said she would rely on data, not anyone’s personal beliefs. Whether she personally agreed with the governor is beside the point, Wooley said.
She intended to refer to studies from states that already had passed similar legislation, she said. Some of the research shows that, with parental involvement requirements, girls tend to get abortions later in their pregnancy, which is riskier and more expensive, she said. Other research shows fewer girls get abortions, which abortion foes like Palin likely would applaud.
And while Palin says she “will not hesitate to speak up in support of Alaska’s daughers,” her concern does not seem to extend to Alaska’s daughters whose parents are literally dying from neglect because of budget cuts and mismanagement. The “culture of life” seems to have an expiration date that our seniors have passed. And left out are Alaska’s daughters who will choose not to talk to their parents, and take matters in to their own hands rather than submit to the emotional stress, embarrassment and legal wranglings of convincing a judge that they were abused, or the victim of incest, or just not ready to be a parent.
By all indications Lt. Governor Sean Parnell, who is set to take the helm of state on July 26th will have his work cut out for him. His predecessor has left him quite a mess. Where will his priorities lie?
July 15th, 2009 at 7:54 PM
That was probably a rhetorical question.
July 15th, 2009 at 7:57 PM
Well if the rest of the state has a spread sheet like the one they handed out to press trying to prove ethics costs, well then i am taking a guess that our state is in a pretty big mess.
July 15th, 2009 at 7:58 PM
129 John(Canadian Mudpuppy) Says: AKM. Could this be the Iceberg everyone is saying will bring the S.S. Sarah down? Could this be the reason she quit? This is by far more damaging than anything I know of to Sarah’s reputation.
——-
Isn’t there eight lawsuits? Why hasn’t this been on the news or reported far and wide?
July 15th, 2009 at 7:59 PM
Sarah should be ashamed for her heartless and careless treatment of this problem. What an ass.
July 15th, 2009 at 8:20 PM
I hate to be a pessimist or a stick in the mud(flats), but Sarah will probably skate by on this just like everything else illegal and unethical that she and her administration has screwed up. The one or two times she was found in violation, she got a slap on the wrist. The Legislature seems to prefer to look the other way or let her slide. The “new” Governor has already stated he will continue the policies of Queen Sarah (maybe she will still be calling the shots). I would have thought that as long as he has been around he would at least replace the commissioners (Palin Yes men) but he has asked them to stay on and they accepted. That seems strange to me.
I hope I am wrong but JMO, I think it going to be more of the same, just with less twittering, tweeting, chirpping or whatever it is called.
July 15th, 2009 at 8:28 PM
This needs MSM attention. Why doesn’t the press pick up this stuff. Why did it just now break? Does the Alaskan Press pay attention? Granted, ADN printed the story today, but why did it take over 200 people to die for this to come to light?
Sorry about all of the questions, but I am astounded. It will be left to the ever pressing Alaskan bloggers to get this story out I’m guessing.
Soon to be ex Governor Palin should be ashamed for not taking action on this issue.
AKM I hope you guys can collectively get this information out to the main media.
I notice the tweets are curiously silent today.
July 15th, 2009 at 8:40 PM
Maybe she’s too busy househunting in the Lower 48 to worry about healthcare. Her Tweets weren’t THAT quiet today:
Todd suggests we buy a 2nd home in the lower48 to make national travel easier. Suggestions? Thinking either Texas or Montana -a big state.
July 15th, 2009 at 8:41 PM
Oops. sorry, I was on the ex gov fake site!
LOL
July 15th, 2009 at 8:42 PM
So confusing b/c they look exactly the same.
July 15th, 2009 at 8:43 PM
That tweet came from the “spoofed” Twitterer…..GINO has been unusually quiet today.
http://twitter.com/akgovsarahpalin
July 15th, 2009 at 8:44 PM
Bumper sticker:
Sarah’s official pic. Next to it:
I [heart] Alaska. Except
Natives, elderly, children, disabled, LGBT, wildlife
July 15th, 2009 at 8:47 PM
Tweet, Tweet, Sarah and Todd…maybe George Bush and Laura will
rent you a room. Sarah, give Bushy a Tweet
July 15th, 2009 at 8:49 PM
When the thaw comes to Alaska each year, there are always bodies found of people who went missing during the freeze and got covered in snow, only to be found weeks, even months later.
I wonder if investigations will show that there were elderly or infirm individuals waiting for help from these programs so badly mismanaged by the Palin administration who, in despair, ventured out in a vain attempt to seek help and then fell victim to the cold in this way when a simple well-being check was missed.
If so, may the guilty parties burn for their sins.
July 15th, 2009 at 8:52 PM
Bakers Dozen, LOL
July 15th, 2009 at 8:59 PM
You owe it to your readers to point out that this mess began under Murkowski and previous legislative budget cuts.
July 15th, 2009 at 9:31 PM
She’s Tweeting about mama bears.
July 15th, 2009 at 9:33 PM
Ok, I am going to go outside my usual box here ((might be due to the stuff that I am on for my back injury) and use a bible quote, Mathew 25:40, “The King will reply ”I tell you the truth, whatsoever you did for one of the least of these brothers of mine, you did for me.’ For someone who waves her christianity in our faces, it doesn’t seem like she abides by that particular quote.
July 15th, 2009 at 9:40 PM
.
Thanks for all the terrible information about the almost-first-female-President. And thanks for helping to keep that from ever happening. We’d rather vote for you.
In fact, we did: You won a Cosie this month, you muckraker, you.
Congrats.
.
July 15th, 2009 at 9:52 PM
My mom was born in Seward in 1925. It is impossible for us to find a doctor who will accept medicare patients in Anchorage. What a way to treat a pioneer.
July 15th, 2009 at 10:14 PM
Hey, Diest!! Have enjoyed your previous posts.
I find it hard to believe there are no doctors in ANC who accept Medicare. Are you looking for a specialist? Even they should accept Medicare. Maybe this is part of the medical emergency that AKM is talking about. Medicare is administered by the State – oh, oh, there goes the red flag!
July 15th, 2009 at 10:39 PM
horrid just horrid
July 15th, 2009 at 10:45 PM
White light to all the caregivers in the mudflats! you are the heart and soul of the family and the community…….remember, every spell you cast – words, deeds – comes back to you threefold. Blessed be!
July 15th, 2009 at 11:08 PM
#162 July 15th, 2009 at 8:49 PM BigSlick Says: “”When the thaw comes to Alaska each year, there are always bodies found of people who went missing during the freeze and got covered in snow, only to be found weeks, even months later.
I wonder if investigations will show that there were elderly or infirm individuals waiting for help from these programs so badly mismanaged by the Palin administration who, in despair, ventured out in a vain attempt to seek help and then fell victim to the cold in this way when a simple well-being check was missed.”"
I don’t know where you are located, Big Slick, but in Anchorage, at least six bodies of indigents were found at Spring thaw. Now, with this information, it is even sadder than it was on the first report.
July 15th, 2009 at 11:11 PM
Medicare is federal, Medicaid is state.
I left a long post on the open thread about this subject. I work in health care (have done a lot of Home Health and now work in a long term care facility). This is not a black and white problem. It is not new. It only got reported on because now the feds are involved (and that is probably a good thing). And because it has obviously reached a crisis stage now.
I love AKM and mudflats and as much as I enjoy SP bashing, I am not sure that this story is balanced at this point. Elderly folks dying while waiting for services is rather dramatic (and makes for good copy) but I am not sure exactly what that means. The circumstances are not at our fingertips to see. I think that the “fatality reviews” need to be done (should have been done all along) before everyone goes overboard. A lot of my patients made the choice to stay at home even though they were advised that they couldn’t get the necessary services that would meet their needs.
A big part of the problem is lack of qualified staff. The turnover for home health aides, etc is intense. Same reasons that nursing homes often lack staffing.
Overwhelmed and lack of qualified staff at the state level (where regulation takes place) is also a problem. I don’t know how many near screaming conversations I used to have on the phone with some of them (some are good-others are complete fools and have no business being in their jobs). They often operate just like an insurance company (deny, deny, deny because they don’t want to pay). Or they pay out astronomical amounts for people who are riding the system (there are plenty of those up here too).
If physicians and other health care professionals are writing to the state and asking for something to be done and get no response, then that is another matter entirely and the lack of state response is unforgivable.
This state has a ton of money for these programs (far more than many Outside). It was originally very poorly regulated and treated like the money tree that would always be in bloom by consumers and providers alike. About 8 years ago I told my fellow health care professionals “this can’t go on forever, eventually they are going to run out of money” Sadly, the response was often “Well, we better get it while we can then”. There are some seriously greedy people out there.
The flip side of that is that health care providers often cannot afford NOT to make Medicaid their bread and butter. Medicare is so highly regulated and bureaucratized that we are buried in paperwork and often don’t get paid for our work. Many physicians are just opting out of taking Medicare patients because the amount of money they are reimbursed is so pitiful that they might as well be working their butts off for free. And that is NOT a purely Alaskan phenomenon.
Something that everyone should know:
Medicare will only pay for someone to be in a skilled nursing facility (nursing home) for 90-100 days and then only if they require at least 3 skilled services (nursing/OT/PT/SLP). If not (i.e. dementia patients or those too sick/weak to participate in therapies), then Medicaid picks up the tab. And that is ONLY IF YOU QUALIFY for Medicaid (as in, you are poor). Otherwise you or your family pays privately (to the tune of $7000-12,000 per month) until you run out of money and qualify for Medicaid. If you bought long-term care insurance, beware, and read the fine print (they may not cover if Medicare doesn’t).
Often the same rules apply if you are at home. If you don’t qualify for Medicaid, no one will help you. You pay out of pocket until you are broke. And good luck finding decent staff.
This phenomenon is a classic example of how f*#ked up our health care system is and why it needs reform and needs it NOW. And Alaskan legislators in Washington are voting AGAINST health care reform.
Yes- our gov should be aware that these things are happening. She should not be getting in petty squabbles with the Public Health Dept because someone does not support HER anti-abortion agenda. The people who were fired/resigned from the Public Health Dept may have known about these problems (I certainly hope they did). Perhaps that is why they left. Or perhaps they left because they couldn’t get anything done because our gov can’t play well with others. I don’t know.
I do know that I want a bit more information before I start screaming for blood.
On the issue of parental notice/consent for abortion, I have weighed in before and I am COMPLETELY against this. I believe that women will ALWAYS have the choice-it is just a matter of whether that choice will be safe or whether lives will be lost because it is outlawed. Stay out of my uterus!
Now I must stop before I start foaming at the mouth.
July 15th, 2009 at 11:14 PM
#170, July 15th, 2009 at 10:45 PM Georgia in NC Says:
And Blessed be! to you as well for your strength & encouragement.
July 15th, 2009 at 11:29 PM
OMG – Daily Show with Jon Stewart is covering the current government health care issues. I love satire. It is so much closer to Truth.
July 15th, 2009 at 11:44 PM
Lovemydogs: Thank you for your point:counterpoint. Very informative. I like being able to learn something about the ’system’. I didn’t realize it was fed v state and you explained that well.
This post made me gasp in horror and made me want to get up out of my chair and come to Alaska and help those poor elderly souls. (Only 30 days left in Germany, thank God).
Thank you Mudpuppies for helping me learn something today, even if it wasn’t pleasant.
July 15th, 2009 at 11:49 PM
KS left Governorship to work for Obama Admin – Jon Stewart: why are governors such quitters? LOL
Discussed that public will have choices. Private vs Public options.
Marketplace would provide a variety of options.
About 180 million Americans covered thru employer. Employer-based coverage can’t switch to government coverage. Government coverage would fill gap in the marketplace – if your employer sheds coverage; that is, if small employers can’t afford, government coverage would become available.
July 15th, 2009 at 11:56 PM
Mother Who Thinks [@42], rebekkah [@113], SmallSteps [@135], and other ‘flatters who’ve let me glimpse into their exceptional lives this night, thank you. Your un-whining candidness and honesty is most refreshing and, to my way of thinking, much-needed in world.
And, touching on the other issue brought up by AKM in the post… I read the ‘Parental Notice and Concent Initiative” – http://www.themudflats.net/wp-content/uploads/parental20involvement20initiative1.pdf
All I can say is: As a parent and as a woman, I find the whole concept of such ‘initiatives’ *extremely* insulting to ALL females. What a patient discusses with their physician about *their* health is no one else’s business. If that person *wishes* to share/consult with someone else about the Drs visit, that is *their* option. It’s NOT the court’s or any one elses. (You can be darned sure that if it were a man’s health discussed in a Drs office, it wouldn’t be an issue…)
And how insulting is it to all the Drs in AK that they have to, by [proposed] law!, jump through hoops to ’satisfy’ the state’s mandate. Odd how, in all *other* matters of patient/doctor relationships, the Dr is trusted to do what is medically the absolute best for the patient, but when it comes to a pregnant, unmarried, unemancipated female under the age of 18, the Drs judgement and years of medical training are, in essence, (per the proposed initiative) scoffed at and are of no account.
I sincerely hope Alaskans look long, hard, and seriously at the proposed initiative. And knock it right off of its tracks. IMO, *any* such ‘initiative’ that would restrict in *any* way a female’s right to privacy and health care is (in case you hadn’t guessed) a bad, bad, BAD thing. b.
July 15th, 2009 at 11:57 PM
#87 July 15th, 2009 at 4:17 PM short-timer Says: “”Don’t know if there are more, but just the sheer numbers in turnover suggests leadership problems at the very top.”"
Yes, it is worse than that. The refusal of the Palin Administration to authorize the negotiated pay raises of state employees resulted in a delay of payment for over a year. The delay of payment did not include interest. This caused many employees to leave state service.
July 15th, 2009 at 11:59 PM
Muppet2:
Oh-it seriously sucks. It does not make the prospect of aging appetizing at all.
For all of you mudpups who are/have been caregivers-I feel your pain. I have seen what you have to go through and used to come home crying at night because it seemed there was nothing I could do to help what seems an almost impossible situation. My father, in Colorado until his death, had none of the options that we have enjoyed up here.
All I can say is make your legislators feet burn if they are toeing the party line and refusing to do ANYTHING about the problem of healthcare.
Unfortunately, as much as I love PO, he is not taking it far enough. IMO We need universal health CARE, not universal health INSURANCE in this country. But good luck getting that passed.
July 16th, 2009 at 12:24 AM
lovemydogs [@172] – I so agree with your not wanting to judge in haste.
In our area, Georgia, annual reports just came out on the death rates at hospitals within the state. One hospital in my immediate area is, as it’s had to do for the past umpteen years, having to (re)educate the public on *what* it does. It takes in the area’s most dramatically ill, the area’s most frail, the area’s trauma AND severe trauma patients, and the area’s ‘normal’ patients. Because of the ‘type’ of patients the hospital sees in its ER and/or admits, its death rate is *necessarily higher* than the rates at a hospital that only takes in ‘normal’ patients.
The ’saving grace’ for the particular hospital, though, is that (every year) it has the facts and figures to show *exactly* the number of patients who died AND the medical/underlying condition the (deceased in their care) patients came into the hospital *with*. There’s a huge difference between someone dying of head trauma as the direct result of a motorcycle accident and a patient dying as a direct result of neglect/negligence on the part of the hospital.
It appears as if AK doesn’t have in place a method for such basic accounting. Sounds, to me, like somebody has seriously dropped the ball on the leadership front that such accounting isn’t already in place…and mandatory at each institution. b.
July 16th, 2009 at 1:30 AM
8 lawsuits and 254 deaths:
“The common thread in the suits is that seniors and disabled Alaskans aren’t getting the services they are entitled to, under the law, Davis said. In one big win, the state Supreme Court ruled last year that the state had improperly cut off or reduced services to more than 1,000 needy people.”
“The CMS review noted that from October, 2006 to May 2009 there had been 27 deaths among people waiting for initial assessments, and 227 deaths among those waiting to be reassessed. ”
“Alaska Senior and Disability Services Director Rebecca Hilgendorf acknowledged problems at a press conference Tuesday, but said the state was already on its way to addressing those issues…
A hiring freeze instituted earlier this year by Gov. Sarah Palin as a cost savings measure delayed some hiring, Hilgendorf said, though some hires were granted waivers.
Hilgendorf said that while some nurses were hired elsewhere while awaiting waivers, that happens sometimes in the highly competitive world of nurse recruiting anyway and can’t be directly linked to the freeze. Palin lifted the freeze June 1.”
http://juneauempire.com/stories/071509/loc_463956258.shtml
Who is responsible?
July 16th, 2009 at 2:46 AM
Love my dogs – thanks for correcting me, and for the very information inside look into the health care profession and its problems.
July 16th, 2009 at 2:51 AM
I just pointed out in the open thread that the ADN has dropped this story off the front page and it is now close to the bottom of the page under the News section, pretty soon …by the end of the day it will be “archived”, with the way they are handling it.
July 16th, 2009 at 4:26 AM
Another ethics complaint was rejected by AK Personnel Board. See http://tinyurl.com/lsjsjmabout 6 hours ago from web
July 16th, 2009 at 4:27 AM
Above, latest chirp from the twit. Which complaint got rejected????
And if they’re all being rejected, then why is it such a “problem” for her?
July 16th, 2009 at 4:39 AM
WTH is she doing running around in her last few days tending to wildlife issues (per tweets, if I’m managing the word salad correctly) when THIS kind of story is breaking?
I would love to see what her campaign/SOS promises were and what she’s actually accomplished.
Obviously, the health and welfare of AKn’s hasn’t been a priority, but her little pipeline and bridge and grizzlies are. Oh, add to that her slutty cheerleader spread, the Look At Me Tour, and other similar parade wavin’.
Anyone know how the “other” sites are spinning this latest abhorrent item?
July 16th, 2009 at 6:54 AM
I’ve sent a link to this post to Greg Sargent at The Plum Line. He was very responsive when I sent him the link to Mel’s blog on the $2,000,000 Meme, and I thought he might see the benefit of disseminating this information about this disgraceful start of affairs further.
July 16th, 2009 at 6:55 AM
sorry *state*
July 16th, 2009 at 7:59 AM
A lack of staffing, especially in the number of nurses who assess prospective clients for home health services and monitor care, has been hampering Alaska…” (snip)
Money is available in the state budget, Hilgendorf said, but a nationwide shortage of registered and licensed nurses has made hiring in Alaska particularly difficult, she said. (snip)
A hiring freeze instituted earlier this year by Gov. Sarah Palin as a cost savings measure delayed some hiring..”
It is unclear what impact the understaffing has had. The CMS review noted that from October, 2006 to May 2009 there had been 27 deaths among people waiting for initial assessments, and 227 deaths among those waiting to be reassessed.
http://juneauempire.com/stories/071509/loc_463956258.shtml
————————————————————————————–
Facts summary:
The programs were/are understaffed..
Money was available in the state budget.
Palin still instituted a hiring freeze as a “cost savings measure.”
8 lawsuits. 254 deaths
ADN: “No other state in the nation is under such a moratorium, according to a spokeswoman for the federal Centers for Medicare & Medicaid Services….(snip)…The state plans to start doing fatality reviews…”
What is “unclear” about the impact that understaffing has had???
8 lawsuits are just the tip of the iceberg. Now that this matter has gone public, expect the number of lawsuits against the state to skyrocket. Gov. Palin should be personally included in those lawsuits for the “cost savings measures” instituted at her command as the Chief executive of the state.
July 16th, 2009 at 8:33 AM
She knew. Here’s her critisicm of national policy, but she references “older AKns”. But here’s the thing – just like ‘Cap & Trade’, she really genuinely doesn’t know what it is.
All on June 8. She had some kind of briefing from someone, somewhere…
Here’s a link re: older AKns & Medicare http://tinyurl.com/ljott2, & a great read by former LG of NY http://tinyurl.com/c44ah5
10:41 PM Jun 8th
True reform should benefit, not neglect, older Americans, the very bedrock of society! In AK, 80,000 AKns age 60+, to be affected by reform.
10:40 PM Jun 8th
RE: Admin’s health care reform: should take place in open, not behind closed doors. It must be sustainable, rather than “deficit neutral”
10:39 PM Jun 8th
July 16th, 2009 at 8:34 AM
Furthermore…..Palin is a yellow-bellied coward for running out and leaving this mess on Parnell’s watch.
8 lawsuits and undoubtedly more to come; 4-5 month moratorium imposed by Medicaid/Medicare; negative publicity, intense scrutiny, and headaches for all involved in this aspect of state gov’t, including the gov. of record.
How convenient for you, Ms. Palin. You are “progressing your higher calling” while everyone gets to clean up the mess.
Don’t count on it, lady. The bloggers will hound you on this issue and every other issue about which you have lied or shirked your responsibility.
July 16th, 2009 at 9:08 AM
Thanks for the many affirmations sent my way. I’m no hero….I didn’t volunteer for this (parenting a child with serious life-long disabilities like Trig but with a mustache and bipolar disorder as well) but no one is promised a perfect child. It is we who make the promise, to love and nurture and “make a way” for the children we bring to life. It is how we stand up to this challenge that speaks to who we are.
I’ve fallen short from time to time and still struggle with the challenges and sorrows. It’s been the torch I wish I could have passed on. It has burned me and left scars. I have found, somehow, the strength to do my best day to day, and to dampen my fears of the future. I haven’t found it to be the transformative spiritual journey that others have, and that may point to some deficiencies in me. But from this very average and well-populated place, people like me face these challenges of parenting, of love, every day.
I get outraged when the advocates of “small government” think I could and should tackle this unanticipated aspect of parenting without community/state/federal assistance. I would have gone under long ago without early learning programs, respite care, special education…..and now, in his young adulthood, home and community-based supports that give him a quality of life. I bring my best to my child; I use my “bootstraps” (….humor, commitment, ability to learn, friends, research, persistence through denial of services, building positive relationships with service providers, regrouping and renewing my efforts to build a life for him, advocacy…..) But I could NOT do it without help.
Thanks to each of you for the tax dollars that reached my family (in the form of services) and kept us from going under. Thanks to the personnel at state agencies and non-profit and direct service providers who kept (and keep) us from “falling through the cracks.” Thanks for the advocates who push these issues forward towards solutions that work, that recognize the needs and humanity of “the least among us.” The alternatives are pretty grim.
A hundred years ago kids like mine who survived infancy were hidden away at home or in institutions, often abused and ignored and devalued until their early deaths. In Alaska, we shipped our children away to Morningside Hospital in Portland until the mid-twentieth century, when we built our own institution, Harborview in Valdez. In the mid-1990s, through extensive advocacy and during the governorship of Tony Knowles, a true advocate and humanitarian, Alaska took the step of closing Alaska’s only institution Harborview, in favor of serving this population in home and community based services to children, adults, and families. We thought we had turned the corner, that it was a brand new day for kids and families.
This remains the right thing to do, financially and morally. This year, in Texas, kids like mine placed in residential state schools were led to participate in “fight club” events for the amusement of the workers who were “caring” for them. People with disabilities are so very vulnerable in every way, yet they are best protected when they are included in the everyday life of families and communities – and the cost to serve them, even those with the most significant needs, is LESS that hospital, nursing home, or institutional care. That is why the medicaid waiver program exists, and why it should be expanded to meet the needs of disabled Alaskans at all stages of life.
It is beyond comprehension to me that under the Palin administration, despite warnings that this was a critical problem, the ball has been dropped in regards to the vital services provided by medicaid waivers, and that even the ability to APPLY for assistance has been halted. There is plenty of blame to go around, but what is important is that we fix this, now.
As I raised Max, I had this little motto on a scrap of paper taped to the inside of the bathroom cabinet. I focused on it every day while I brushed my teeth. It kept me going. I think it is the same thing that keeps Mudflatters and service providers and public servants who genuinely strive to make things work for those among us who need our active help and concern.
It reads like this: COURAGE does not necessarily roar. Sometimes it is the quiet voice at the end of the day that says, “I will try again tomorrow.”
That, pretty much, is all there is for any of us.
July 16th, 2009 at 9:26 AM
Another excellent post AKM – and to the thinking mother – you are a hero to Max and all the other kids and adults you speak for but will never know.
“What lies ahead of us and what lies behind us are tiny matters compared to what lies within us.”
Bravo to you both for all that you do -
July 16th, 2009 at 12:18 PM
Dear Mother Who Thinks,
I am at a loss for words. What an intelligent, beautiful and heartfelt post. More people need to read this.
Thank you for sharing and Bless you and yours
July 16th, 2009 at 2:08 PM
Mother Who Thinks:
I took guardianship for a 5 month old special needs baby, 15 months ago. It is an amazing experience… I am fortunate in her high functioning, but still so very grateful for the support that is out there for her from so many programs. In comparison to your journey, mine has been relatively much easier so far, but it does give me a glimpse of the challenges you have faced. Truly you have demonstrated amazing courage, and you remind us all of what is important in life. We all have a duty to make sure our social programs and safety nets are there for those who need them…your story is a perfect explanation as to why!
July 16th, 2009 at 8:38 PM
@ilovemydogs
Ilovemydog also,too.
Your are so right the coverage for the disabled or for long term illness is all over the united state. My son lives in CA. For years he has not been able to find a doctor that will accept his state coverage. He can go the the emergency room for care but for his routine monthly trip to the doctor we have to send him a check for private pay. I used to work in skilled nursing facilities in Rehab and it just broke my heart for the patients and the rest of the staff. The staff (at least most of them) tried really hard to do a good job,until they lost heart in realizing that the work load and what they could really do was not realistic.The facility would caution us to use less gloves because they were losing money yet at the nursing station would be the company news letter that would say the parent company made a zillioin dollars last quarter. When the administrator of the facility would tell me that I would pickup the news letter and say “then you should not leave this out so that I can see it”. I don’t know why she never fired me. Thanks for your story.
July 17th, 2009 at 9:41 AM
It is now Friday, 7/17 and I still don’t see this story on Huffpo. Huffpo daily carries stories about Palin that are on par with “Palin Slept Last Night!” Why not this?
Have I missed it?