I Believe in Change

I believe in the power of reaching out to the politicians who represent me.  Having worked for a state legislature, I know that when constituents call or write in about specific issues, they are noted.  Politicians do listen and often your voice can bolster their ability to make change.

Unfortunately, my experiences in the last few years have served to show me how far removed my representatives are from understanding the plight of those with disabilities – including mental and physical illness, in poverty, and homeless.

I do believe that politicians care about these issues.  I do know that politics impede many from doing their job (whether or not because they are involved in the sometimes House of Cards-like games).  But overall, I still have some idealism left in me to hope that they can and will make change.

That is why, in the past few years, and particularly of late, I have made it a point to reach out to my representatives – at every level of government, including city, state, and national.  I have shared my story openly, holding back nothing.  While part of me wishes they could help me individually, I know that is not likely to happen.  Rather, my intent to share my story and my struggles is the same for writing this blog or speaking at universities – to try to bring light to the issues many are facing and yet don’t always get the opportunity to voice.  Bringing awareness of the issues isn’t enough, change needs to occur. But that change can only occur if those in positions of power see the true stories of their constituents who need them to act.

Unfortunately, my attempts have been a bit discouraging.  Many politicians have not replied at all.  Some have replied with rather canned answers.  And those who have put in some effort to answer (which I greatly appreciate) point me towards resources that I’ve already exhausted.

A few years ago, I wrote to a politician explaining how the mental health system is failing us:

Just a few weeks ago I had to spend over 6 hours over 2 days (4 of which involved waiting on hard plastic chairs) to have an intake for mental health services only to find out I am only eligible for a waiting list…The only way to access mental health services was to go to the psychiatric emergency services location and spend another 5 hours waiting.  Luckily they were able to find a bit of funding for me to attend group therapy.

Imagine my surprise then, when the response I got came in the form of an email from the organization where I had already spent hours upon hours seeking resources.  I had to laugh. Here I was talking about the very resources that don’t work only to be pointed directly back to those resources.

More recently, upon explaining my story, I’ve been pointed back to resources that are easily found through google searches, auntbertha.com, or the United Way (2-1-1) – resources that I’ve already found, called, and been let down by.

I’m not surprised honestly.  If you haven’t faced these types of adversities before, these would be the resources and organizations you would first turn to.  They are great resources and doing the best that they can to serve too many in need.  But they are all severely limited and especially right now, don’t have the funds to help all those seeking help.

It is rather frustrating to hear back from our leaders with these resources because it shows me that they just have no idea what it’s really like to be poor and sick, struggling to get by day to day.  They don’t know that not only is low income housing a problem, but that the list of low income housing at Colorado Housing Search is not up to date.  They know that there are lists of homeless shelters but they don’t know that it’s about the only handout that every doctor has to address the issue (they don’t have any other resources themselves) – nor do they probably know that most mats at a shelter don’t come with a pillow.  They know that the Denver Social Security office deals with disability determinations but that it will not help me in any way (other than the review of my disability benefits that will come up at the end of the year).

I’d be surprised if they knew about or how to connect their constituents to the Medicare Savings Programs (QMB/SLMB/QI) as options for low income individuals who are on Medicare (which includes those on disability) or that the federal program is administered incredibly ineffectively through state Medicaid offices.  I bet they don’t know much about Part D Low Income Subsidies (also known as Extra Help) or the LINET (Limited-Income Newly Eligible Transition) program that those eligible for Extra Help can use until Extra Help kicks in.  I don’t know if they’d know about the Colorado Lawyers Assistance Program which helps lawyers with mental health issues and has meetings every week through Lawyers Helping Lawyers (and similar groups for other professions).  I’d be flabbergasted if they knew about auntbertha.com or needymeds.com or goodrx.com.  I’d be surprised if they knew the Colorado Coalition for the Homeless has a PATH program for those with mental health illness and that the Delores Project requires a referral and has a waiting list like all low income housing.  Would they know when NAMI holds their mental health support group meetings around town? Or how to use the Colorado PEAK site (where you apply for food stamps and Medicaid)?

My guess is that they don’t.  And while they shouldn’t have to know every last program available, they should know that there aren’t enough resources and they should know more than they seem to.  If they are fighting for individuals with disabilities who are homeless, they might want to know there are no resources to help someone who have no credit because of medical debt and thus will never be able to pass a credit check on the regular market.  They should know that there aren’t homeless shelters that accommodate someone with agoraphobia, two cats, and several physical disabilities.

But among the many issues that they must attend to, these are the realities that are often unseen.  That only the truly desperate would wait this long for or go out of their way to find help only to be told that nothing can be done – another waitlist, another referral to another agency to go through the same process.  The problem is a lack of resources available to those in need (to be clear – there isn’t a lack of resources. There are plenty of resources, they just aren’t made available).

New solutions need to be advocated for and created.  Not in a 10-year affordable housing initiative but right now.  We need to take care of people now.

And we need to find ways to prevent this from happening to others. Because this could happen to anyone, anywhere.  All it takes is a chronic illness (mental or physical) or even some bad luck (a natural disaster) and the slide down into the depths of despair and struggle can be triggered like an avalanche.

I’m very fortunate to have the education and abilities that I do despite my many physical and mental health illnesses.  I am fortunate to have the generosity of others who are willing to try to save me in this abyss I am wading through.  But for these things, I would have no health care or medicines.  I would be living in my car and have had to give my cats (emotional support animals) away.  I would be hungry and cold and in more pain than I already am.  Honestly, I would probably be on the verge of another suicide attempt thinking I am nothing but a burden.

You’d think that I’d give up on politicians after these failed attempts.  But even if they’ve failed me, I need them to fight for others.  I haven’t been completely disillusioned by the political system.  I think there is a way for our leaders to make change – radical, meaningful change.

If my story can be part of inspiring that change in any small way, whether it ultimately helps me personally or not, than I will keep telling it.

I hope they are listening.

The moment of change is the only poem. – Adrienne Rich


See also: “Us” vs. “them”: The under-served patient speaks up

And if you are able to support me in anyway, I would greatly appreciate your assistance by visiting my generosity.com page.

Update 2/2/2016: After posting this, the Colorado PEAK system sent me an alert that I needed to fill out forms to redetermine whether I am still eligible as a Qualified Medicare Beneficiary. Considering that I have not previously been asked to fill out this information since my application last summer, I find it suspicious that I happen to need to fill out this paperwork the day after I talk about getting politicians involved in helping those with few resources.


3 Responses to I Believe in Change

  1. Erin, my friend. Thanks so much for shedding such a detailed light on such important issues. I read this entry & I agree with so much of what you’ve said here as far as efforts & discouraging replies. I’ve had my share of those over time too. But even if it goes somewhat ignored, it would go completely if people like you did not speak out. I’ve had mixed reviews too – very nice success stories on the national front on rare disease funding, but mixed to responses on increasing organ donation awareness & getting updates and replies on a state level. But yet, I persist. Sometimes it takes repeated efforts & yelling in the ear before they take notice. Then sometimes they do when you least expect. But so much of what you state is too important to continue fight that for the community as whole. I agree to just give up only makes things worse.

  2. Kelli B says:

    No politician responds to emails directly, they have young poorly paid staffers (I was one) who do the best they can to respond to people but they aren’t a social service agency. They are focused on policy so you are asking for help in the wrong places. Counseling and housing can of course be provided for the most vulnerable but here in Chicago we have people on the street who are psychotic so it is hard to imagine providing free housing to someone who is depressed..( 1/4 of all women in their 40’s is on an anti-depressant)

    People have been poor, sick and mentally ill for a long time and expecting other people to suddenly change funding won’t happen over-night and the limited resources should go to those who are unable to advocate for themselves first. Pretty much everyone I know has a disability and are able to work part time since that is a much more viable solution then begging for money or services.

    It looks like you are able to drive, read, blog and write so I wonder if you couldn’t get a part time job doing the exact same thing (answering emails and connecting people to services) you need for others at a social service agency?

    • Thanks for your input. If you see by my bio you will see that I worked for the Texas State legislature and this know quite well what politicians and their staff do and that I also worked at social service agencies doing this at one point.

      You may also want to read my earlier posts explaining my health conditions which include several autoimmune diseases and chronic health issues as well as borderline personality disorder and PTSD. BPD is a serious and pervasive mental health illness that is much more debilitating than mood disorders such as depression which I also have.

      Also, if you’ll read previous posts you’ll see I’ve discussed the statistics othat you mention, that 1 in 4 differ from mental health illnesses as well as other issues surrounding mental health.

      While I am able to write and I try to advocate, I am unable to keepeven a part time job at this time. You may want to read my post entitled “But You Have Your Law Degree” fir a perspective on what it means to have mental illness and how it can be debilitating no matter what your education level or capabilities are.

      While I am asking for assistance at this time, I am not asking for free housing. It does feel like begging to me, which I hate myself for more than you can imagine and makes me think of killing myself often. You may want to read my post entitled Taking, Giving, and Feeling Like a Burden for a perspective on how this is very hard for me.

      I am disheartened to read.your comments but think they are important to share add they illustrate a stigma that exists in this country around mental health illness and the judgment those of us struggling face everyday. I continue to write when I can and advocate for myself and others precisely for this reason.

      My hope with this post was to explain what services are out there, the gaps that leave many including myself without, and encourage legislators to pursue policy changes to ensure the most vulnerable are taken care of. We have a lot we can change in the system and no it won’t happen over night, but it can happen.

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