Letter(s) from Placer member to stop IHSS cuts
June 19, 2008
From Jeanne Andrews, Home care provider and UDW member

To my union; United Domestic Workers:
I am an IHSS worker and the primary caregiver for my mom who has Alzheimer's. She has another IHSS worker too who relieves me 3 times a week. One week before the sub-committee hearings I received an automated phone call from my UDW union with an urgent message regarding the IHSS cuts proposed, the hearing, etc. Up until that time, I only had 2 sketchy bits of information pass my way in the previous week; I had read that the Governor was planning major cuts to social services in the state once, and a friend had read a more extensive article in San Francisco and said she was worried how the cuts would affect us. Without that phone call, reference to the union web site and the information I found there, I probably still would not be aware of what is really going on in our state for 2 reasons. One is that the details of the across-the-board cuts are not in the news and the second is that, as a caregiver, I'm pretty busy and kind of already have enough on my plate to worry about. All of that sounds like a lame excuse now that I am aware of what's going on.

Anyway, THANK YOU for that phone call. I did go to the union web site. I did write a letter (please see below) to my friends and representatives. I did solicit about 20 other individuals to write letters too. I did go to the subcommittee hearings. Our caregiver was able to change his schedule and accommodate my 7-hour outing. I sat in on both the Senate and then the House hearings. I learned a lot. I talked with union representatives from across the state and got a lot of useful information. Bringing my mom in to meet our local representatives was one example which I am planning. Attaching a picture to my letter was another. I am working on getting an article in the Sacramento Bee.

I was finally able to get in contact with our social worker with IHSS and was reassured that 2 of the cuts, to domestic services and share-of-cost, will probably not affect us if they are approved since my mom has Protective Supervision (consumers in that category are guaranteed the number of hours assigned through that category). However, the cut to worker wages would mean a 20% loss which will make our already tenuous financial situation that much more so. It will make it all that much harder to find and keep caregivers to help me out with my mom. As the only family member my mom has to take care of her, it will require that I find more outside work in addition to caring for her
to make ends meet. The catch 22 being, how do I pay for someone to take
care of her while I work more hours...

So, I will continue writing letters and I am so grateful that our county is part of the the union. I appreciate everything you have done to increase wages this year and the last, and will try to fight the cuts designed to dismantle all that hard work.

Thank you,
Jeanne Andrews (and Dolores Hanson)

Letter from Jeanne Andrews to enlist the help of friends to save the IHSS community from budget cuts

Dear Friends,

I hope this letter finds you well. My mom continues to maintain her health at a sort of plateau and is in good spirits. I am well, but have a very important concern to share with you. I really need your help in the form of a letter-writing campaign in support of In-Home Support Services (IHSS) and to stop the devastating budgets cuts proposed by the Governor of California. This is actually a very urgent plea.

I am attending a sub-committee hearing tomorrow at the Capitol (05/29/08); luckily our own IHSS worker is available to stay with my mom so I can go. Sadly, those most in danger, the elderly and disabled like my mom, in large part cannot go there themselves, or sometimes even speak for themselves, which is why I am hoping you will consider adding your voice to my own voice, and possibly the voices of those you know too. The union, which represents IHSS workers, is organizing a letter-writing campaign to fight the cuts. With that in mind, feel welcome to use any part of this letter in yours, if you choose to write one. Once these hearings are completed, each senator and assembly person will need to hear from those concerned because the budget will be decided upon this summer, so within weeks. Here is the link to the IHSS union http://udwa.org/ where the details of the program and proposed cuts to it are outlined, as well as links to an e-mail example letter, to find your local representatives, and a letter-writing link http://udwa.org/write_lg.htm.

I have been told by a political expert (the IHSS union says the same on their web site), that a hand-written letter is the most effective way to make your voice heard. The union believes that 1 hand-written letter is counted by legislators as representative of 500 opinions from others who don't take the time to write. Presumably, a typed letter is probably worth a bit more than e-mail, but again could be part of a mass bulk mailing, and is not as valuable as a hand-written letter. We all know what it means to "give until it hurts," and hand writing a letter may be more painful than sending a check for some of us, but please consider the impact that your time will have on the thousands of people affected by these proposed cuts, including my mom and me.

Thank you from the bottom of my heart for reading this, for any time you spend reading about IHSS, writing a letter, and soliciting letters from others. Please write your letter soon, time is of the essence.

With love, your friends,
Jeanne and Dolores

Letter from Jeanne Andrews to legislators, enclosed to her friends

The Honorable __________
California State Assembly/Senate District #_
XXXX XXXXXXXX Street , Suite XXXX
XXXXXXXXX , CA 99999

Dear Assembly Member/Senator ________,

As your constituent I am writing to you to ask that you oppose the devastating cuts in the In-Home Supportive Services (IHSS) program that the Governor has proposed in his May Revision of the state budget. I know you will have a lot of tough choices to make when it comes time to vote on the state budget this year, but I am asking that you vote to oppose cuts that will take services away from most of the elderly and disabled in this state. Without this program many of those who use IHSS will end up in nursing homes and other institutions at a much higher cost to the state.  

As you know, IHSS is available for the disabled and seniors who qualify for Medi-Cal, have statements from their doctor, and who have been interviewed in person by a county social worker who determines what level of care is needed based on a formula of allowable needs, allowing these people to stay in their homes (for on average $2,000 a month) at a cost far below that of a nursing home (which is estimated at $10,000 a month). My mother, who has late-stage Alzheimer's, receives the highest level of care, known as Protective Supervision, meaning that she needs supervision 24/7 due to mental impairment. She cannot use a phone to call for help or negotiate getting out of the house in case of a fire for example. She needs a caregiver to help with all of her activities of daily living for a variety of reasons, both cognitive (due to memory loss and confusion) and physical (due to rigidity and severe imbalance, loss of 3-dimensional sight, and in coordination). She needs assistance with eating, drinking, bathing, dressing, taking medications, being repositioned (kept from slipping out of the chair or leaning in an awkward position), regularly changing her position to prevent ulcers. She can walk with assistance only and is incontinent. She cannot prepare her own meals, do any housecleaning, laundry, shopping, etc. She needs to be pushed in a wheelchair when outside of the house and cannot negotiate it alone.

IHSS allows the maximum 283 hours per month to her for this high level of care. As her primary caregiver, I use most of those hours (on average that breaks down to 7 hours a day, 7 days a week). The remainder of her hours goes to another IHSS worker who relieves me of my duties 3 times a week 4-5 hours a day. When he is here to supervise my mom, I can go to the store to shop for groceries, visit a friend, run an errand, take a break. While it sounds like a lot of hours off the top, after other caregivers and taxes, etc., I do still need to work half-time in addition to IHSS to keep us going in our 2-bedroom apartment. Within this delicate balance, we can manage to break even.

The proposed budget cuts to IHSS are quite severe. If approved, how do I find people I can trust with my mom who are willing to work for $8.00, which is what the Governor wants to slash the hourly wage to? The union brought only brought the wage up to $9.00 from $8.00 last year, and the $9.50 wage went into effect this last January. The plan to permanently slash the total number of hours per month per recipient of all domestic and related services such as food preparation would effectively begin dismantling the program. Further planning to eliminate the share of cost which the State pays for low-income seniors is nothing but inhumane and would mean that each recipient would need to pay over $450 before they receive any benefits. I would clearly be providing care that I am not paid for if these cuts are approved. Plus, as I am already working as much as I can while still caring for my mom, where would I find that missing estimated 30%, possibly 50% loss of income? Would we even be able to afford to pay another caregiver to relieve me to take a break at all? Would I be able to pay for my health insurance? The questions go on and on. The answers to all of the questions keep boiling down to one thing though, and that is that I could not afford to keep my mom at home any more and she would have to be institutionalized.

Alzheimer's is progressive disease, which has left my mom with an underlying loss of function and intermittent episodes of waxing and waning symptoms. One of the newer medicines has helped to slow this progression and create a plateau in her condition. In addition, in her home environment, she does not require other medicines, except on a rare basis. In the daycare setting, which she attended for about 6 months 3 years ago, we saw that anti-psychotics and anti-anxiety medicines were used for her to function. I have been told that in a nursing home environment, those medicines would be used on a regular basis. Unfortunately, for the Alzheimer's sufferer, these medicines quickly induce a state of catatonia when used regularly, which is one of the reasons why we had to stop using the daycare 3 times a week. The other reason is that in a group setting, advanced Alzheimer's victims cannot handle what they perceive as over-stimulation and basically shut down to a sleepy state. Therefore, I believe my mom's quality of life would suffer greatly if she were not able to remain at home.

Some of my other many concerns are whether she would be able to maintain the ability to walk indoors with assistance. The consensus among the physical and occupational therapists, nurses and social workers who have visited us over the years is that she would lose that function first. They tell me that they are in nursing homes daily and someone who has my mom's level of imbalance would be considered a 2-person assist; in other words, she would be in a wheelchair all day. That would lead to rapid deconditioning and loss of overall health. I wonder if she would have the 1-on-1 attention and time needed to eat, drink, and swallow her pills. I am informed that in the nursing home setting, this would be the second thing that would show a dramatic and quick change of course, because there simply is not staffing available for that much time with 1 patient. Would her position be changed often enough to prevent bedsores? Would she get any 1-on-1-conversation time with anyone except when I visit? I don't know.

What I do know is that with the aid of IHSS, as it is currently structured, my mom is able to remain at home. She is not in unnecessary pain created by a lack of movement or neglect; she is not in any pain at all. She is consolable when she is in fear of being alone, gets confused, or needs time to articulate her needs. She is given lots of music to listen to and she still claps after the songs. She gets lots of love and attention, and appears comfortable and content. She has her cat to pet, which makes her smile. She has her familiar surroundings, which are very important to her routine. She always tries as hard as she can to cooperate with every activity. She is able to communicate still, and says things like, "Thank you, and I love you," many times every day, even on bad days. On good days, she is able to carry on a bit of a conversation. She is not over-medicated.

My mom generally reflects whatever mood I, as her caregiver, am in. I use several methods to live in the moment, think positive, and maintain a cheerful disposition. Not surprisingly though, in writing this letter today, I've dredged up feelings of grief, related to reviewing the chronic issues we deal with daily, and fear, regarding new issues crippling budget cuts would bring if approved. It's also not surprising that this would trigger a river of tears, which I almost never tap into otherwise. I stopped to check on my mom, she has been murmuring along to a movie about Glenn Miller, and the murmuring stopped. I asked her how she was doing. She said, "I'm happy," and gave me a big smile.
Actually, that says it all. 

Thank you for listening to my concerns and I hope that after reading my story you find it easier to vote no on the Governor's inhumane budget cuts to IHSS. Please keep me informed on the budget as it relates to IHSS. I hope your vote reflects my concerns.

Sincerely,
Your name

1234 Highway to Heaven Dr .
Almost There, CA 12345
Telephone number

I'm shuttled here and shuttled there,
sometimes I think they just don't care.
I know they do, but in my heart,
sometimes I feel so far apart.
Apart from all the special things,
the things we know that life should bring.
Like having babies, driving cars,
going places near and far.
I know these things cannot be,
for someone has to care for me.
Oh how I long to do just one,
One of those things, before they're gone.
I have my place in time you see, I feel the love surrounding me.
All of my friends they try their best,
to make me happy - just like the rest.
My mommy tells me all the time, that I was sent through space and time.
I was sent from up above, just to comfort and to love.
To be with her until the time, the light in her no longer shines.

Editorial regarding proposed cuts to CA healthcare services May, 2008
by Michael Just, Santa Barbara

As an advocate for systems change, before I shoulder support for a particular issue or policy, I need to weigh it for its potential social impact. For example, supporting an issue such as getting a curb cut or a bus stop for a wheelchair on an exurban stretch of roadway is rather light weight, compared to something like having one’s State-aided dental care program terminated or having one’s IHSS (In-Home Supported Services) hours cut and provider's wages reduced to minimum wage. Those are weighty issues, affecting many more than one single wheelchair user. Not that the curb cut and bus stop are unimportant, they’re just not as critical as maintaining cost effective in-home self-management programs as well as continuing to provide essential, life-sustaining medical services for a few million of our State’s aged and those with disabilities. It is therefore, to these weighty issues I now ask you to hearken to. 

This onerous consideration, i.e. wheeling and dealing politically with the lives of so many, brings me to the heart of this essay: our governor, having proposed budget cuts to the State’s supported healthcare maintenance programs, primarily IHSS and Medi-Cal, placed a gigantic weight onto the backs of those people who can least manage the extreme load; the low-income program recipients themselves and the State’s taxpayers. 

Let’s perform a swift review of governor Schwartzenegger’s “plan” for our state’s senior citizenry and for those people with disabilities. In January of this year he came forward with his annual budget report/analysis. At that time he claimed that California would not be able to pay its bills for the remainder of fiscal year 2008 through fiscal year 2009, all due to a $14 billion budget shortfall (January’s estimate). The governor informed us that due to unforeseen revenue shortfalls, the State could not sustain its current levels of spending. The culprit was the sub-prime loan fiasco, meaning that zillions in property taxes would not be forthcoming, and that loss combined and snowballed into all other facets of business concerning State and city finances. I think everyone gets that: the State is experiencing a fiscal crisis. What we all seem to disagree on is how to bring about some balance. We need to spread the misery around –evenly, to everyone, and not resort to ripping away programs that support lives already teetering on the brink of medical and financial disaster. Our governor said he had an economic Plan: Californian’s, he said, would save hundreds of millions –if not billions, of dollars by reducing the amount of money the State reimburses physicians, dentists, and others in the health care industry.

It was then and still is my contention that the implementation of the reduced reimbursement would create much hardship, hardship that would fall heaviest on (1) those people working as in-home personal attendants (PA). This group of workers would receive the hardest hit: a most disturbing and drastic cut from their current number of allowed work hours, and (2) those people receiving IHSS services would also lose those same hours of personal care. At their current rate of pay ($8 - $10 per hour), IHSS PAs can barely exist now, so how can they exist after these draconian cuts in pay? The governor's latest proposal is to ADDITIONALLY drop all wages to $8.00 per hour - minimum wage. And as for the IHSS recipient trying to hire and hang onto an attendant, who will do the challenging work recipients need to have done? And, it is a myth and a misconception to believe that IHSS recipients can mange with fewer hours, or that their relatives can fill-in the gaps service-fee free. Being someone’s arms and legs, and at times their mind, takes an immense amount of time and physical and emotional effort. Can anyone honestly say that in the unfortunate event a loved one becomes chronically ill and requires in-home assistance, how much Time, right now, could any of us allot that person free of charge? That’s how our governor would have it. Do work for free and admit to nursing home sound like the solutions of an enlightened leadership? It does not.

There is one very important thing one could easily overlook if one blinked an eyelash, and that’s a federal act known as The Olmstead Decision, enacted in 1999. The case focused on whether regulations implementing Title II of the Americans with Disabilities Act (Title II requires states to operate public programs in a non-discriminatory fashion and to furnish services in the most integrated setting appropriate to an individual’s needs) require placement of persons with disabilities in community settings rather than institutions. The Supreme Court’s ruling is summarized as follows:

1. The Court noted that unjustified institutional isolation of people with disabilities is a form of discrimination, noting the history of institutionalization as a means of segregating and demeaning persons with disabilities.
2. The Court ruled that states are required to provide community-based services for persons with disabilities otherwise entitled to institutional services when:
   The state's treatment professionals reasonably determine that community placement is appropriate;

Therefore, scaling back IHSS funding is a form of “removing a person from their community,” and thus, the proposed cuts totally fly in the face of the Olmstead Decision by making individuals even more vulnerable to being institutionalized, and the cuts are, therefore, discriminatory. 

I cannot repeat this enough times, the proposed IHSS and Medi-Cal cuts will injure recipients and their providers, and I also claim that cuts to those programs will injure taxpayers, as well. In fact, I suggest that the long-term effect the cuts will have will be to (1) raise the numbers of homeless in our state, and (2) people will drop off the IHSS rolls, and some –and perhaps many thousands, will end up in some form of institutional care facility. And while I don’t like being referred to as an alarmist, I have to look at the conversations coming out of Sacramento and think to myself, “If these statements I hear become law, people will not be living as before. Life for us all will change dramatically for the worse.”

It’s really basic economics: any rise in the number of institutional admissions (nursing home, residential care, skilled nursing facility), creates an equal rise in the cost of care. In this case, the cost of institutional care rises substantially, and also in this case, it is the taxpayer who will pay –pay up to four times more for that patient’s care now that they’re taking up space in a nursing facility. So, instead of the State shelling out $9,000 per recipients’ average annual cost of in-home care, you’ll be coughing up $55,000 annually per nursing home patient. How does that add-up for Olmstead compliance? It doesn’t.

In addition, there are many other essential services slated for termination. There is the State Cost-Of-Living Adjustment (COLA) for recipients and agencies, which is usually only 2%, while real inflation rises at approximately 7% annually. This annual adjustment will not be funded for this fiscal calendar either, leaving every recipient living at 2007 standards, when gasoline was one whole dollar cheaper per gallon.

The percentage of across the board cuts (financial spending cuts through every State funded program: medical, education; parks and recreation areas, etc) was set at ten percent. Unbelievably, Denti-Cal will no longer perform preventative dental care nor any adult dental care. Absolutely zip, nada. How does that add up for Californians, who, with every purchase made within the state’s borders, pays taxes? It does not.

Whichever direction a senior or person with a disability turns, some service or program is being reduced or taken away and terminated, to levels below the poverty line, and once again their lives will are –as they are every few years, put upon a chopping block during a budget crisis, and are hacked here and there for whatever meat may still be left on the bones. Which seriously begs the question, “What force can feed such an engine of enmity?

As it turns out, I’ve heard that someone in Sacramento believes that there are two things at play regarding IHSS and Medi-Cal and all of the other human services, and that is (1) because family members make up a large percentage of the IHSS in-home attendant payroll (42% in Santa Barbara county), then there must be some type of fraud, i.e. that family members do not really “work,” and that their participation in the care of their dependant relative should rest solely on the relatives and not the State, and (2) the State wants to eke out those undocumented recipients, or in other words, they want to renege on previous promises. Levels of cynicism have rarely reached ranks this high (or is it low?) in Sacramento, but right now it is over-the-top.

Those cuts percentages were bandied around for a few harried months, while justifiably riled disability advocates and unions held rallies and demonstrations around the State calling for the governor to halt his plans to dismantle IHSS and hunt for some alternative revenue sources. Advocates called for taxing this and that, a few pennies hiked here and a few hiked there could close the budget gaps, but no republican would bite. Some house republicans had even signed pledges swearing never to resort to raising taxes. I mean, never? Not even if it means tossing people into the streets?

And then in May, administration officials must have realized that should they actually follow through with their anti tax hike drumbeat against so-called tax-and-spend liberals, their resistance may backfire on them and they’d be caught holding a big explosive ball: an even more controversial “look what you’ve done now” situation could unfold on them. So in the governor’s May budget revision, he reveals his well thought out plan: we can repair the budget deficit using future state lottery revenues, a square $15 billion by 2010. This lottery solution has been analyzed by the non-partisan Legislative Accounting Office (LAO), and they concluded that the plan cannot have any major effect on the budget, and its basically the administration grasping for straws.

All the while they’re willing to sacrifice the health and well being of hundreds of thousands of low-income seniors and people with disabilities for the sake of sustaining the enormous tax loopholes they’ve built into the laws for themselves and for their very wealthy constituents.

One has to ask one’s self, “Just what sort of thin line are seniors and people with disabilities having to negotiate, and how much worse would they fare should the budget cuts in their present form take effect?” The answer to that question is truly staggering. In Santa Barbara county alone (and this is considered one of the most affluent areas in the State) the number of mental health programs to be cut –and some by one-hundred percent, number in the dozens, and as programs cease to be, more and more individuals who once depended on those services, will be standing in different lines the next time. The next time they’ll be in a breadline, or they will be in a long wait in the emergency room, far from the previous comfort of living in the confines of their own home.

Keeping the level of funding for senior and disability programs while generating alternative revenue sources is the morally correct action for Californian’s to take. What action can you take? Concerned citizens should write letters to their State legislators, call their offices, and make certain they get the message: the governor’s budget plan is not a plan at all; it is a blueprint for disaster for everyone concerned. California can do much better. What happened to our ingenuity? We cannot allow a handful of republicans to hold back a march of smart and innovative solutions. We need a state forum where we invite entrepreneurs to ply their innovations. Let’s try every avenue before cutting off a very essential and vibrant part of our communities: the seniors and people with disabilities who comprise almost 20% of California’s diverse population.