Choices?

Last week we met with the social worker/consultant and a lawyer to discuss the possible solutions for managing the costs of meeting Keith's healthcare needs going forward. Today we got the news in black and white. Even with all the positive elements in our favor, the long-term outlook is grim to say the least.

Here's the breakdown of "choices" available to us:

1. In order to shorten the time necessary to qualify to be evaluated for eligibility in the Community Based Alternatives program, Keith enters a hursing home/institution for a minimum of 4 months (more likely 6 months). Given the near-death experiences and deterioriation of health he experienced in the last rehabilitation center, this is not an acceptable option.
2. Apply for the Community Care for Aged and Disabled program. To do this, Keith is required to reduce countable assets to $6000. This is accomplished by either moving existing assets to a trust administered by a parent or transferring to another trusted individual. If the trust is created, it must have a "Medicaid payback" provision which means that once Keith passes away, all monies received from the government must be paid back from the trust. The purpose of the trust is that Keith would not have personal access to the funds.
3. The real kicker is that to qualify for any support at all, Keith and I can have a combined gross income no greater than $4044/month. If we exceed that number, then all support is stopped and have to wait 6 months to reapply for support.
4. Oh, and we could always get divorced. Apparently the institutions that actively encourage you to get married, use that against you when it comes to seeking support.

In truth, none of these choices are palatable. No matter which way you look at it, we only get the minimal support offered by public entities if we agree to impoverish ourselves and give up any control over our lives. Not only is Keith put in double jeopardy by compounding his physical disability with financial constraints, but I, as his wife, am equally bound by these limits. By these standards, we are both discouraged from being productive. Hard work and the commensurate financial rewards are punished by the system which is counter-productive at the very least.

Ultimately, I think our best bet is to shake ourselves free of the financial shackles that are offered by the governmental monies. By virtue of our creativity, age, networking skills, and ability to communicate our story, we are uniquely positioned to develop a financially successful alternative to the "choices". Naturally, we'll share the solution with the world!

Don't be Fooled by Sister Sarah's Bridge to Nowhere

In her speech last night Sarah Palin made a special effort to connect with folks whose lives have been touched by disabilities. With a wink and big smile, she said you will "have a friend in the White House". However, on the off-chance that she will become the Vice President of the United States, she still won't be occupying the White House. That will fall to John McCain who has declared that he will not support the Community Choice Act. He even states that publicly in this video. John McCain is NOT a friend to people with disabilties. And, as the record apparently shows, neither is Sarah Palin. (I have been reading an Alaskan political blog called Mudflats: Tiptoeing Through The Muck of Alaskan Politics. Last night the author made a comment about Governor Palin cut funding for special needs programs in Alaska. Once he writes the full post, I will share it here.) I have no doubt she loves Trig and all of her children, but I do have doubts that she has a true idea of the extra time and attention it will take to create a full life for him.

As the primary caregiver for my husband Keith, I am appalled at the glorification of caretaking by a woman who has a whole network of people who are taking care of those 5 kids. It is a daily struggle to manage our home, the attendants, Keith's business life, my business life and, oh yeah, my identity beyond all that, a woman named Ruth who has had the same chipped nailpolish on her nails for the last few weeks. (It's not a fashion statement, it's a testament to the fact I've got other more pressing uses for my time.) Wow, I just counted up my responsibilities...looks like I've got 5 kids too. However, I don't have a whole state at my disposal and I certainly don't have national support for my work.

Without the Community Choice Act, none of us will.

Time for the Big Guns: Keith's Letter to Oprah

With Oprah's new season starting, I thought we should do our part to kick it off well. So, naturally, we thought she should hear Keith's story. Please feel free to use this letter as a basis and let her know that you think it's a great story too!

You can send your message to Oprah HERE.

++++++++++++++++++++++++++++++++++++++++++++++

My name is Keith Hogan and I am 43 years old. I was born with a genetic disease known as Spinal Muscular Atrophy Type 2. I also have severe scoliosis and respiratory problems. I have lived with these conditions my entire life & I've never been able to walk. Over time, I have lost the ability to use my arms. You can see more about me here: http://www.youtube.com/watch?v=1S9D8y89GM8.

On 2/18/08 I was hospitalized due to pneumonia & chronic respiratory failure. Within a week of being admitted, I had an emergency intubation, received a tracheotomy & was put on a ventilator. I had several episodes that brought me close to death. I was finally released from the hospital to move back home on 5/27/08. I have continued to recuperate but the medical expenses not covered by Medicare & the extended coverage I purchased through Humana are outstripping my financial capacity to pay for the level of care I need. I find myself in a large & growing group of people who have too much money or assets to qualify for the benefits they need, but not enough personal financial resources to pay for the care they need.

At the present time many potentially productive members of society are being warehoused in nursing homes which are funded by Federal dollars, little of which is spent on quality patient care. This can be changed by the Community Choice Act which is based on the concept that the funding follows the patient, thereby empowering the individual.

I have come to understand how absolutely flawed the entire healthcare industry in the United States has become. I believe that ineptitude, greed & systemic corruption brought us to this state. America can & must do better. The unarticulated public policy of impoverishing people with disabilities, who might otherwise be a productive part of society, must be abolished. This is not just a healthcare issue. For people with disabilities, it is a matter of human rights.

PSA: Community Choice Act

As all good public information channels must, we're having a short break in the regular programming for a Public Service Announcement. (You can thank years of watching PBS pledge drives for that, lol).

Since our sojourn into the healthcare maze, we have found one piece of legislation that has given us a bit of hope that lights the way. You may have heard Keith and I refer to the Community Choice Act on a number of occasions. I thought it would be helpful to share the information here as well as give you a quick link you can use to tell your elected officials of the vital importance of this legislation if we want to be able to live indepenent lives to the best of our abilities. Keith may be the first person you know who personalizes this need, but I am quite sure he won't be the last.

Community Choice Act

For decades, people with disabilities, both old and young, have wanted alternatives to nursing homes and other institutions when they need long term services. Our long term care system has a heavy institutional bias. Every state that receives Medicaid MUST provide nursing home services, but community based services are optional. Sixty seven (67%) percent of Medicaid long term care dollars pay for institutional services, while the remaining thirty three (33%) must cover all the community based waivers, optional programs, etc.

Families are in crisis. When support services are needed there are no real choices in the community. Whether a child is born with a disability, an adult has a traumatic injury or a person becomes disabled through the aging process, they overwhelmingly wan t their attendant services provided in their own homes, not nursing homes or other large institutions. People with disabilities and their families will no longer tolerate being forced into selecting institutions. It's time for Real Choice.

The Community Choice Act provides an alternative and will fundamentally change our long term care system and the institutional bias that now exists. Building on the Money Follows the Person concept, the two million Americans currently residing in nursing homes and other institutions would have a choice. In addition, people would not be forced into institutions in order to get out on community services; once they are deemed eligible for the institutional services, people with disabilities and their families will be able to choose where and how they receive services. Instead of making a new entitlement, the Community Choice Act, makes the existing entitlement more flexible.

The Community Choice Act establishes a national program of community-based attendant services and supports for people with disabilities, regardless of age or disability. This bill would allow the dollars to follow the person, and allow eligible individuals, or their representatives, to choose where they would receive services and supports. Any individual who is entitled to nursing home or other institutional services will now be able to choose where and how these services are provided.

TAKE ACTION!

Please click HERE to both speak for yourself and for others who have no voice.

Just press SEND

As Keith and I attempted to wend our way through the byzantine healthcare system, it rapidly became apparent to us that we were going to need an expert to help us sort through the information and determine whether any of it was good news.

For example, in early July we were told that a representative from the Texas Department of Aging and Disability Services (DADS) would be contacting us in a few weeks to arrange a time to assess Keith's eligibility for their services. We were happily surprised that she actually showed up a few days later, thereby speeding the process. Within 10 minutes of her arrival, it became clear that we were not going to benefit from the standard DADS program because of the stringent requirements of financial need for married couples: $2800/month gross income and no more than $3000 in assets (aside from your home or automobiles). We were disappointed, but not surprised. The DADS agent was very nice and genuinely wanted to help us find a solution. She then told us about the Community Based Alternative program which basically allows you to have the services of an institutional health facility at your own home. We were excited about this option until we learned that there is a 3-5 year waiting period!

Naturally, there's a loophole (apparently there is at least one loophole for every law passed in Texas). You can skip to the head of the line if you are in a facility for 30+ days and get an assessment immediately. Here's the secret password that should be your first words on Day 31: "CBA Bypass". Once those magic words are spoken, you are whisked to the top of the list and an agent conducts a home visit, arrangements are made and, voila, you have the benefits of state support in the comfort of your own home.

Only one problem. It doesn't work that way.

The truth is that you still need to qualify financially for Medicaid. The other more soul-shattering truth is that you have to stay in the nursing home about 6 months before you are considered for the CBA program. Those are two HUGE things to leave out of the conversation.

Both of those truths underscore the unarticulated public policy of impoverishing and marginalizing people with disabilities. To deny access to all the things that make life worth living so that a person might receive moderate support from an uncaring authority is patently un-American. There is no life, no liberty and no pursuit of happiness. We provide more support to visitors to our shores than natural-born productive citizens whose only limitations are physical.

This is a shameful situation and those of us who have the good fortune of physical wholeness have a responsibility to share those abilities to make a difference. I'm not talking about ditching your life and taking on the burdens of others. It's much easier than that. Simply share these stories with others, particularly politicians, social messengers and other market makers. In order to change the world it only takes three steps: copy, paste and just press SEND.