SSI Again

I’ve written about SSI before and I’m going to do it again.

People on SSI have been deemed by the federal government to be disabled to the point of not being able to hold a full-time job. It is a program of the Treasury Department that is managed by the Social Security Administration. The laws regarding SSI, who receives it and how much monthly income a person can receive are all controlled by Congress.

In the majority of the United States people on SSI are given a monthly benefit of $500. Some states, like California, add money to this. In California, instead of giving people on SSI Food Stamps, the state directs that funding into SSI. This brings the California SSI benefit rate to roughly $866 per month. The state share equals $366 per month per person.

In California there are roughly 1.3 million people living on SSI. The majority of these people have significant developmental and mental health disabilities. Some are blind and some are physically disabled.

The biggest benefit of SSI is needed medical care. The biggest drawback is the monthly income limit.

The benefits to the country are significant. People with severe developmental disabilities are able to use SSI programs and rules to work part time in their communities. There are thousands of not-for-profit organizations that assist people in finding jobs and working. In Mendocino County programs like ABC do an amazing job. Their participants are able to give their services to their communities. And their communities greatly benefit. The thrift store you shop at, the grocery store you visit, the highway rest stop you use have more than likely benefited significantly from people living on SSI.

People on SSI clean bathrooms, sort donated items, sweep sidewalks, act as cashiers, stock shelves and much more. The vast majority of people living on SSI give back to their communities far more than they are ever given in return. And they are more than happy to do it.

Most of you know that I am on SSI. I have an Autism Spectrum Disorder. I also have a variety of other physical disabilities. And I give back to my community as much as I can. I voluntarily manage a video archive; a project that has been the greatest thing I have ever done. I have met some absolutely amazing people. I can count as my associates Peter Shaplen and Valerie Coleman Morris. And I work for television legends Jan Yanehiro and Richard Hart.

I also spend much of my time volunteering at the Marin History Museum. I have volunteered with the Museum since 1996 and joined the Board of Directors a few months ago. I am honored to be able to serve the Museum in any capacity.

What I am most thankful for is that both of these organizations has accepted me with open arms.

There are significant issues with SSI and the rules Congress has put in place since it was started in 1974. And there is some fraud that takes place. Some of it is understandable and some of it is outrageous.

You might not know that the people I mentioned above that have contributed significantly to your communities are paid significantly less than minimum wage. Part of this is because if they work under a certain federal law (which gives them less than have of minimum wage) their SSI is not affected.

BUT if they worked half-time (20 hours per week) at minimum wage (roughly $142 per week at the federal minimum wage level of $7.25 per hour) they would risk losing their SSI and medical benefits. How does this make sense?

I live in San Francisco. The average rent for a 1 bedroom apartment is $2,800 per month. In some places in the United States the rent could be as low as $300 per month. And so many people here are forced to live in closet sized rooms and share a bathroom with 60 other people. And they have no ability to improve this situation. Their only other option is to live on the streets, which some do. But there is nowhere in California you can find a 1 bedroom apartment for less than the total amount people on SSI receive.

And let me add that people on SSI do not automatically receive housing assistance through HUD and Section 8. And even if they did less than 1/10 of all landlords are willing to rent to people receiving Section 8 assistance. And this is a good place to discuss fraud.

Is there fraud? Absolutely. There are some people living off of SSI that don’t deserve the assistance. Someone that claims to have a severely damaged back but can then lift a 50lbs box is defrauding the people of the United States. And states contribute to this fraud. When you go to apply for state funded general assistance (at least in California) one of the first things they do is try to get you on SSI. The state does not want to pay so they find a way to force the federal government to pay. And those of us that really do need the assistance suffer.

And then there are those on SSI that do, legally, commit fraud. They work under the table so that they can have the money to eat. This is quite common. And they really have no other option. They are forced to either defraud the government or starve to death.

You probably don’t know that people on SSI are not allowed to receive any type of assistance from others. We are not allowed to accept food from our families. We are not allowed to accept clothing or grooming products. And we are not allowed to accept any amount of extra money, even if it is only a $1 to ride the bus.

There is a program through HUD and Section 8 that allows us to buy a home but we have to have at least $20,000 to pay for the downpayment and closing costs. But legally we are not allowed to have any assets that total more than $2,000.

How does this make any sense?

The reality is that it doesn’t. SSI is a disaster. It is not meeting it’s original goals because Social Security and Congress have significantly complicated things. And there are more than 6 million Americans that are suffering. Is there a way to fix this? Absolutely!

First the government needs to allow the American Psychological Association to decide what specific mental and developmental illnesses cause life-long disabilities. Many children on SSI have been diagnosed with ADHD. This is a mental health issue that rarely follows a person into adulthood.  And this diagnosis does not mean the person can’t work a full-time job.

Secondly the government needs to weed out people that are on SSI solely because of addiction issues. Their problems should be handled by the states.

But the biggest thing Congress can do is redefine SSI and the people that qualify for it. In my learned opinion SSI should only be for people that have life-long disabilities (pre 18 years of age) or have a genetic condition that causes a severe disability later in life (like MS).

I then propose that SSI be solely the finical obligation of the federal government. States would not have any involvement and would be bared from suggesting that anyone seeking state benefits apply for SSI. And once this is reality I would set the monthly SSI rate at the equivalent to a full-time job at federal minimum wage. I would then allow individuals on SSI to work as much as they like as long as their income does not exceed $1,000 per month above what they are receiving through SSI.

When it comes to housing why can’t we start a new program through HUD that includes rentals and ownerships. On the rental side let’s say that someone on SSI pays no more and not less than $200 per month. And on the ownership side lets say that banks and individuals can donate code compliant houses and condos in return for a tax deduction equal to the market rate for that property. This make sense to me.

And the final part is healthcare. I say let’s develop a new section of Medicare solely for people on SSI. This section would pay for all medical expenses, including mental heath services. No copay’s for medications and no premiums for issuance policies.

The goal of all of this is to both support people with severe disabilities and allow them to contribute as much as they can to their communities. I have seen people on SSI do some pretty amazing things. But they are never recognized for their courage and endurance. And I should know. I’m one of them.

Living with Myself

I don’t write very often. Maybe it’s time I start doing it more often.

I am here at home watching TV thinking about how I feel about myself. It’s a strange thing. I know logically that I am a really good person. I don’t hurt people. I don’t break the law. I respect everyone’s differences.

But what I know logically does not match what I feel about myself. When I was growing up I was told by many people that I was stupid. I was treated as an outcast, someone who would never fit in. I was put in school programs for people with behavior problems even though I didn’t have them. I was also verbally and physically abused by a number of people, some of whom are not dead.

Their voices resonate in my head. Every hour of every day I question who I am. I have this nagging voice in my head that says I am a terrible person. Somehow I have come to emotionally believe that I am the worst person that has ever lived. How do I deal with this?

The truth is that I don’t. I tell people that I fight back and that I have overcome a lot of difficult things. And it’s mostly true. But the one thing I can’t seem to overcome is myself.

I am full of ideas. There are a lot of things I want to accomplish in my life. But the nagging voice keeps me from being able to focus on them. I get caught up in a lot of different ideas. I have a hard time selecting one to focus on.

I am also not a people person. It’s not that I don’t love interacting with others. I thrive on it. But I don’t know how to do it properly. I don’t know how to be like most other people. I am who I am. But who I am gets in the way at times.

And at the moment who I am is causing me to move backwards instead of forwards.

The SSI Fix Part 1

The United States gives over $4 billion in tax breaks and credits to big oil companies every year. These are companies that combined make over $200 billion in profits each year. Do they really need tax breaks? And remember that there are only a handful of them.

Each month we give someone with a permanent disability roughly $500. This is meant to pay for their rent, food, medications, utilities, etc. And then there is no extra assistance helping them go to college. And the rules for them being able to work are extremely complicated and can end up in their losing their health insurance (Medicaid).

Now imagine if that annual $4 billion we give to big oil was diverted to assist people on SSI in achieving a four-year college degree. These people (those actually able to go to college) would then have the ability to get good paying jobs. And many just might want to work in the public sector.

SSI is a program created by President Nixon designed to offer support to people with life-long disabilities. The program was meant to give these individuals enough of a monthly income so that they can pay their rent and other life expenses. This way they could focus on their health and and medical issues without having to worry about where their next meal was going to come from.

Today SSI has been turned into a program that forces people to choose between health care and food. Many people on SSI are homeless; suffering from severe mental health issues which then lead to severe substance abuse issues for most of them.

This system has to change.

The fact is that in California more than 1.3 million people are on SSI. The majority of these people have developmental and intellectual disabilities. The majority of people in SSI will never be able to attend a four-year university. And the majority will never be able to achieve gainful employment.

But for those that can, there needs to be financial assistance available to help them achieve their dreams. For someone living on SSI to have $100,000 in college debt shows just how messed up our system is.

At the same time there needs to be quality housing options available. What would be so wrong about diverting money from the Section 8 program to help those on SSI who are not able to get employment? What is wrong about diverting welfare and food stamp funding so that they go to people that truly are not able to take care of themselves?

And what would be wrong with taking away corporate welfare and giving those funds to the people President Nixon was so dedicated to helping?

Some dramatic changes need to be made and I am ready to start the fight for them. I am tired of seeing people with severe disabilities living on the streets. I am tired of seeing people with developmental disabilities teated like 3rd class citizens. And I am sick and tired of people like myself being denied a University education.

People With Disabilities: Time For Change

Are people with severe disabilities treated like second class citizens? Absolutely!

The federal government has been offering financial support to people with permanent disabilities since 1956 (called SSI since 1974). The goal is to make sure people who are permanently disabled and not able to work full time receive the financial benefits needed to live even just a basic life.

The federal benefit level is $674 dollars a month (California adds an additional $171, for a total of $845 for CA residents). This is meant to pay for everything; rent , food, transportation, utilities, clothing, medication co-payments, etc. If you want to get a job to increase your income you then have to deal with a complicated set of rules that end up with you loosing both your benefits and health insurance. You end up being punished for wanting to work.

Currently the federal government says that for an American citizen to live a basic life they must have an income of roughly $1,160 a month. California says it must be roughly $1,280 and month. And San Francisco says it must be roughly $1,638 a month.

I live in San Francisco. My income is limited to half of what the City says is needed just to live in the worst neighborhoods and eat rotten food. Is this fair?

SSI is not Welfare. We are incapable of holding down full time employment. And most of those on SSI live with severe developmental disabilities. And many of us want to work and give back to society. I personally donate many dozens of hours a month. I feel productive and I know that I am giving back to my community. But if someone wanted to pay me for my work I would have to say no. My medical insurance is vital to my survival. If I get paid for my work I loose my insurance. I would physically deteriorate and end up in a nursing home rotting away for the rest of my life (and I’m only 37).

And there is more:

If you are in SSI you do not automatically qualify for housing assistance. In California you do not get Food Stamps. And you do not automatically qualify for assistance with transportation or other basic needs of life.

Now, I have been attending a University for the past 5 years. The federal government has a cap on how much an individual can receive in federal grants and loans. I have reached the cap. There is no extra assistance for people on SSI. And there are no private loans or scholarships for people with disabilities. If I were a part of any other minority group I would easily be able to continue my education. But because I am disabled there is no assistance for me. No one cares how hard I have had to work to be where I am. No one wants to hear it. And even if I did qualify for other scholarships my age would be an automatic denial since I’m in an undergraduate program.

You are not on SSI because of your attitude or level of education. You are not on SSI because of your race or gender. You are on SSI because in 1956 Congress felt that you needed assistance to survive. And in the 1970s President Nixon felt you deserved a streamlined system that was less confusing and offered you more benefits.

How is any of this fair? There are changes that need to be made:

1) I truly believe SSI should solely be for those who have been disabled since before the age of 18 (or those born with genetic conditions that cause disability later in life).
2) Make SSI a permanent program with no reevaluations.
3) Raise the base rate to match the minimum wage of where the recipient lives.
4) Create a new housing program that subsidizes rents for people on SSI and that limits the ability for landlords to say no. At the same time give the landlords a greater ability to evict tenants who cause problems. And have no cap on the cost of rent that is to be subsidized.
5) Create a 2nd housing program that encourages financial institutions, developers, and private home owners to donate their housing/units to people on SSI. This will create permanent homeownership and increase the number of rental units available for others. There would be a cap on the cost of the property and the building would have to meet building code requirements and repairs would have to be designed to last at least 15 years. The program would also be limited to people aged 35 or older. And only be for those who are intellectually capable of taking care of their own housing.
6) Create a new section of Medicare that covers all medical costs for people on SSI. Funding would come from a transfer of federal Medicaid dollars (people on SSI get Medicaid).
7) And finally, allow people to work no more than 20 hours per week and be able to make up to $1,500 a month before reduction in benefits begin.

We have a moral obligation to support those who are incapable of supporting themselves.

And so I ask the question again: Are we treated like second class citizens? Absolutely!

A Healthcare Revolution

Do you like the state of medical care in the United States? Most people would say no.

Did you know that socialized medicine was first proposed by Republicans and supported by Presidents Nixon, Reagan, and both Bush’s? And of course Mitt Romney instituted socialized medicine in Massachusetts.

Republicans only started opposing it once President Obama said he supported healthcare reform. Pathetic!

I am disabled and live on Medicare and Medical (the California version of Medicaid). I must say that my benefits are better than most private health insurance companies. But there are many things I don’t get access too. This included glasses and dental care. And the care I do receive is determined by politicians, not doctors.

The question of whether healthcare needs to be reformed is one that is on most people’s minds. The answer is a resounding YES. Our current system is based on companies making the highest profits while paying out the lowest benefits. Millions of dollars are spent annually on appeals.

Does it make sense to allow corporations only concerned about making profits to run our healthcare system? Of course not. We are the only country that does this.

Healthcare should not be part of capitalism. It is a vital part of our society and a system that should be as simple as possible. If a qualified doctor says you need a medication or a surgery, you get it. If you need an MRI you get one. No waiting months for appointments or years filing appeals. You simply get the medical care you need. And in the least amount of time. We like to say we are the greatest country in the world. It’s time to start acting like it.

Currently if you have a medical emergency at home you call an ambulance and they take you to the hospital. In France you call an ambulance and you just might have a nurse practitioner come to your house. This can save you from an expensive trip in an ambulance and a costly ER bill. A system like this in the US would save insurance companies tens of millions each year. Treating minor problems at home is more far more cost effective than our current system.

Here in the US if you develop an ear infection in the middle of the night the only options are to either suffer until morning hoping your Dr might have an available appointment (which they usually don’t) or go to an emergency room. The ER can cost upwards of $1,000 just to walk in the door. This is before you even see the doctor, who will bill you separately. It also does not include the nursing staff or the supplies used. These costs are added on to the initial cost.

So what is the answer?

It’s time for a non-political or financial look at our healthcare system. If we institute sensible changes and hold accountable those committing fraud we can lower costs and still have healthcare be a part of the open market system. Here is a few basic ideas:

1) Attach a nurse practitioner or physicians assistant to all ambulances.

2) Restructure ER’s to operate as 24 hour healthcare clinics that can also perform emergency care. This would significantly lower costs. Have then staffed with nurse practitioners who can offer basic services or send you to emergency services if needed.

3) Put all doctors at hospitals on salary instead of the current procedure by procedure payment system. This will equalize pay among our medical professionals and make sure that general practitioners and internists receive fair compensation. It will also lower costs for insurance companies.

4) Make all doctors that are attached to hospitals part of the paid staff at those facilities. This will eliminate separate billings, thus eliminating patient confusion.

5) Let doctors make medical decisions, not politicians or administrative personal. There is no excuse for a office worker denying someone a life saving surgery just to save money.

6) Limit how many types of policies insurance companies offer. What’s wrong with offering Bronze, Silver, and Gold level policies. Bronze would be basic care and Gold would cover everything. This would eliminate confusion and make costs clear to people looking to purchase new policies.

7) Force hospitals to make billing simple and straight forward. Don’t allow them to charge people for each and every little thing. Currently if your doctor asks for a CT scan of three part of your body your insurance company (and many times the patient) is billed for 3 separate scans. Hospitals also charge for the time it takes for a nurse to give you your medicine, which should be part of your care, not an extra charge.

8) And most importantly, treat us like patients, not consumers. Purchasing health insurance is not the same as buying a chicken or a bad of oranges. Treat us with respect and the dignity we all deserve.

The Druggies & Rehab

Recently I was asked “why do we treat people for drug and alcohol addictions in cities like San Francisco?”. I must admit I don’t know the answer.

But it’s an import an question. The truth is that we spend millions of dollars a year in the United States on recovery programs that have proven to be failures. Most of the programs in located in our inner cities, where drugs are readily available and stress levels are high. It makes no sense.

For seven years I spent my time advocating for people with serious mental health issues. I also spent time working in programs that assisted the homeless and addicts. Rarely did I see someone achieve any real level of recovery.

Mostly I witnessed people go through a one month program and then be released back onto the streets without any support. They might get a referral to a mental health program and told where they could get free meals, but that was it.

Many of the people I served has come from jail or prison. Some of them where homeless. And some of those were convicted child molesters and rapists (note: the program I worked for secretly refused to help these individuals, and we never told them we would not serve them). Probation was of no assistance and the community did not want them living in any type of permanent housing. At one point Probation tried to do the right thing and rented part of an old motel, located a half mile from any residents. But the community freaked out.

I witnessed people going in and out of rehab; mental illness running rampant; homeless people treated like pariahs. It was unfair then and it’s still unfair today.

This is not the world my parents grew up in. Back in the 1940′s and 50′s there were state run institutions people could go to for rehab and mental health care. They might not have been the best, and some were deadly, but they were something. This changed in 1972 when Republicans lead the charge to close state hospitals and transfer people into communities. BUT the funding was never given to communities ftp treat these people.

There is something else that is different; hard core drugs like Heroin and Crack are new to our society. They were not available back when my parents were growing up. Neither was LSD and a few other illegal substances. Now certainly some where available. Cocaine was once used as medicine and even given to children. Opium was there and of course we was alcohol.

The types of homeless have also changed dramatically over the past 50 years. In the past you would find alcoholics on the streets. And you would find people who just liked being outdoors. And there were those without any form of education. Many of these people also suffered from severe abuse growing up and were kicked out of their families. BUT they did not have the mental health and drug issues we have today.

Now, I will tell you that alcohol abuse is nothing new. Prohibition in the United States was started because of rampant alcohol abuse. Many women became sick and tired of their husband coming home drunk and abusive. The women had had enough and started fighting back. In all of the stories and teaching about Prohibition, the rampant alcoholism is rarely mentioned.

Let’s sit back and think about the opening question. It’s a good one: Why do we treat drug and alcohol addictions in cities like San Francisco? It can’t be because it’s cheaper. And it can’t be because it makes sense.

The biggest problem facing rehab programs is not budget cuts, it out-of-control advocates who are blind to reality. They are so focused on their ideology that they can’t see the damage cities can do to many people’s psyches.

The stress of living in a city can be overwhelming to the most mentally stable people. If you are over anxious and/or an addict your stress level is through the roof. The constant noises and the traffic whizzing by can be mind boggling. Add on to that the stress of finding a place to live and having enough food to eat and it’s no wonder people go crazy.

And yet society has dictated that it is best to serve people in their communities, no matter how much that community is tearing them apart. I’m going to use a very blunt word to describe this: stupidity.

Yes, stupidity. You are stupid if you spend millions of dollars on rehab and refuse to see that it’s not working because of where you are doing it. It’s stupid to think that people can kick their addictions when they are living with drug dealers. And it’s stupid to think people can beat alcoholism when they live in neighborhoods with multiple convince stores at every intersection.

Stupidity is the right word to use. It might not be politically correct, but it is the correct none the less. There are a lot of people out there acting stupid and hurting a lot of other people in the process.

What can be done about treating people’s addictions? It’s pretty simple.

When I worked in mental health advocacy I helped develop a plan to convert part of a Native American reservation to a “camp” like environment. It was the tribe’s idea and one many people fully supported. We knew there was no sense in treating people in communities where their stress levels were high. Treating them on a farm made sense to us. Creating a peaceful and quite community where everyone contributed to it’s success was more important to us than listening to people who only cared about furthering their ideologies.

Think about what it’s like to go camping or living on a farm. Planting a garden or taking care of animals is very soothing. It’s hard work but you have something to show for it. You feel connected to nature.

It makes sense to treat people in a place that is far away from the stresses of everyday life. But there is another problem in all of this. Where do people go when they are through with the problem?

The current solution is to put them back into the communities where they were living before going into treatment. They are released back into environments where drugs and alcohol are all around them. How is this fair to them? And how is this helping keep them sober?

Of course it’s not fair. And few stay sober for very long. It’s a major flaw in our system. Some say it’s the people own free will to go back home. But is it really their choice where no other option is given?

The obvious answer is for some of them to stay on farms and work the land. They can continue to get mental health treatment and participate in ongoing rehab services. And if they don’t want to farm then maybe they make furniture, or clothing, or any number of things. Just as long as they are doing work that keeps them busy and makes them happy.

Some will want to go back to their known environments. They will relapse and probably end up in jail or prison. At some point when is enough enough? That’s not my place to say.

What I do know is that our current system is broken and is hurting, rather than helping, the people it’s supposed to be serving. There might not be one single answer. But the current programs are not working and major changes need to be made.

What is it going to take to change things? I have no idea. Sadly I don’t think anything is going to change as long as the government listen to ideologies who care more about their own issues than helping those with real problems.

The Pain

When I was 8 years old I witnessed a terrible accident in which my mom was seriously injured. It was 1982 and 30 years later she still deals with severe pain. As a child I truly thought she was going to die. The months she spent in the hospital away from us were heart breaking. Seeing and hearing her cry out in pain hour after hour, year after year. Nothing anyone could do about it. And pain medications rarely taking the edge off her pain.

Every time I hear an ambulance my heart sinks just a little. I fear for her and for myself. The thought of her passing is unbearable.

My dad did not know how to deal with her pain. He truly loved her and was devastated to see her in such a difficult situation. Our family was never the same.

My mom has been through a lot in her life and she has survived. I don’t know how she has done it. The effect of the pain on her life has not been pleasant. She’s not always able to be the nicest or have the energy she would like. And some people in the family seem to lack the ability to understand the situation she is in.

BUT my mom is a survivor. She fights through the pain and is happier now than she has been since the accident 30 years ago. My biggest hope is that we get another 30 years. I love my mom with everything I have. It’s hard for me to be so far away from her. At times I feel guilty for leaving.

When I do finally lose her I’m not sure how I’m going to react. It will be devastating.

I’m sitting here thinking about how we need to cherish our parents because time with them is short.

Follow

Get every new post delivered to your Inbox.

Join 409 other followers