by, Renee Wood

Disability is now a profitable government (tax payer) subsidized market for private enterprise.  The issue is, although government is paying billions in support of disability related programs, and private enterprise is making huge profits, most people with disabilities remain impoverished, under/unemployed, disempowered and enslaved for life.  How can this be?

This article will analyze a few things about capitalism in order to understand the fact that, government placing money directly into the hands of private enterprise to care for the needs of people with disabilities, only serves to enslaved and impoverish this population by making them commodities to collect and make a profit from.  Also, this article will discuss the fact that money is power (whether right or wrong that’s today’s reality), so whose ever pocket the money is coming out of, is actually the boss (in the case of caring for the needs of people with disabilities, the government is the boss).  Finally, we will look at ways people with disabilities, families, and/or guardians could truly be empowered, cut government costs and drive the market to be disability responsive.  It is imperative to understand that the people paying are the ones that will set-up expectations which will drive the market.

While reading this, also keep in mind government programs generate more need for more programs to ensure the previous programs are efficient and doing what was intended.  When gaps are found, or inefficiencies or fraud are discovered, more policies are created, and people are hired, or government departments created, to oversee and ensure that these policies are followed.  This creates the illusion that the government is looking after tax monies, but It actually creates a never ending spiral that grows until it’s too heavy financially to sustain and then the whole system comes crashing down.  The good news is, it doesn’t have to come to this, but it will take a radical shift in how things currently work.

 

How Capitalism Works

Let’s begin with a simplistic way in which capitalism works.  Upon preparing to write this paper I read; “An apple, grown in one’s back yard, is just an apple, with no apparent value except to the owner who may eat it.  It only becomes of value to others when he decides to market it”.   From this I extrapolated; the apple now is a commodity to be marketed to the public to get them to see its’ value, and therefore spend money to buy it, hopefully enough that the owner of the apple will make a profit after expenses.  In this simplistic example, who’s the boss?  The Apple?  The owner of the apple?  The buyer of the apple (the market)?  Or the government?  It’s the buyer of the apple because their purchasing power will determine the owner’s actions to make more profit.  For example, to make a bigger profit, the market may demand that he make his apples redder, bigger, or sweeter?  The owner has some sentimental attachment to his apples, so there’s certain things he may not do, even though it may increase profit, such as; use chemical fertilizers that grow bigger, unblemished apples with less taste.  He may sacrifice pretty apples for better taste.  The point is, although profit is market driven, if the owner has some emotional investment or attachment to that object of value, he may accept less profit for better quality.   At the same time, the money says what people see as valuable – big tasteless apples may get the lion’s share of the market, or maybe the puny tasty apples will.  Who knows – there just apples anyway!

So, can one market “caring”?  Or better yet, can one market a whole lot of people who need lots of care?  I believe if there is a need, people will see a business opportunity and find away to make a profit, and that’s not a bad thing.  In fact, if the market works the way it should, it can be good.  Let’s say people with disabilities have money in their pocket to purchase the care they require, including; accessible housing, transportation, employment readiness, attendant care services, etc. they are going to look for agencies to meet their expectations.  Agencies are going to spring up to meet those expectations because there is a market for it.  My hypothesis is people would gravitate towards agencies that showed they truly cared on and off the clock.  Businesses will please those who are paying them.  Of course, they’re in it for profit, not charity, so one should expect to pay for what they get right?  The consumers of care would drive what services look like – what they want.  They will put their money behind businesses who will deliver the care they want and businesses will compete for that market.  If you remember nothing else from this article, remember whoever’s pocket the money comes out of, is the boss!

 

How The Market Delivers Care Now

The main buyers of care for people with disabilities are the federal government through the Centers for Medicaid & Medicare (CMS), Housing & Urban Development (HUD), Federal Transit Administration (FTA) Social Security Administration (SSA), and Vocational Rehabilitation (VR).  These monies flow to State departments such as State Departments of Developmental Disabilities.  These different state departments give these monies mostly to private businesses (except transportation and some housing which are owned and run by local government authorities) to care for the needs of this population.

In this situation, the market caters to the wants of the Federal, State and local government in adhering to policies that dictate how people with disabilities should be cared for.  It doesn’t matter whether this care takes place in the community, or in an institutional setting, the way these providers of care receive compensation is through the government.  The prices for care are set, there is some give for extreme behavioral issues, or very intense medical needs such as a vent user, but pay is standard.  There is very little room in negotiating with the individual even when receiving this care in the community.  Things that could be negotiated such as, “My mom does my hair, and changes my sheets once a week, so if you could scoop the litter box instead”.  If individuals were paying out of pocket, they could negotiate their individual needs for their particular lifestyle.  The way it works currently with the government paying the care agency directly, if the individual/family complains that the aid sits and watches TV, or an institution inadvertently neglects someone for a day, (assuming there wasn’t any tangible evidence of harm) that agency/institution will still more than likely receive pay for those hours.  Why?  One day is not cost affective to investigate.  The individual and the agency/institution know what happened, but the government is unaware.  If that individual was paying out of pocket, do you think agency/institution would get paid for that day?  NO!

Of course, the bureaucrats believed they thought of a way to put the authority of care into the hands of people with disabilities, family members and/or guardians by creating the policy of “person centered planning”. The government hires assessors to decide level of care that a person needs, and a dollar amount gets attached.  This dollar amount resulting from the assessment is just for assistance with activities of daily living (bathing, dressing, meal prep etc.  However, this does not include housing, transportation, employment assistance (although some Waivers do include some employment assistance), etc.  That level of care dictates not only the dollar amount, but a list of services that will be provided, and direct care provider agencies who have people pre-trained in how to deliver these services.  There’s little room for the person in the center of the pre-conceived plan generated by the assessment result, to negotiate anything other than the color of bowl they eat their Cheerios from – if the staff remembers to ask out of their hurry to get the care done quickly, so s/he can watch The Price is Right on that individual’s TV at 10 AM!  Person centered planning will never work as intended, unless the person (or someone who intimately cares about them) has control of allocating and authorizing payment.

There’s something inherently wrong with the government setting the amount paid to business, and being the primary purchaser of the service.  In the world of businesses that provide care, they pay direct care workers a minimal amount, usually with few to no benefits, because the government gives these businesses a set amount per person. Therefore direct care workers also suffer from some excessive profit seeking businesses.  Current figures show that these businesses receive $21 to $24 per person an hour, and pay direct care workers $9.50 an hour on average.  That’s at least $11.50 an hour for overhead and profit for the owner!  The government sets no standard of pay these businesses pay direct care workers, other than minimum wage.

 

What is Commodification?

Commodification is, in the Marxist sense according to Wikipedia: “the transformation of goods and services, as well as ideas or other entities that normally may not be considered goods, into a commodity”.  An extreme example of this would be slavery – the buying and selling of people like apples!   But it’s more than just the buying and selling of people, it’s the whole industry created around it.  The manufacturers who created collars and chains to fit the necks of humans, shipwrights who incorporated ways to harness humans in ships to hold as many as possible while minimizing the loss of commodities.  Also those who sold training on how to manage slaves in getting the most work out of them, yet controlling their behavior.

We no longer have slavery in America in the sense of buying and selling (owning) humans to work for no wages while making profit for their owner, or do we?  First, let’s go back to apples.  We’ve established in this article that the government is the purchaser of care for most persons with disabilities, and people or entities who buy goods and services drive the market. So logically it follows that the government drives the market of care, rather than those who utilize these services.  In the apple analogy, the government would be the boss, the care agencies would be the buyer of the “care” for the apples, but who originally owns the apples?  In other words, the government doesn’t just buy “care”, it needs something tangible that agencies can care for – that would be the “apple” who is the person with a disability who requires care.  If persons with disabilities had a “choice” whether or not to “need” care, or if they were financially affluent enough to purchase what they need for their disability, that would be different.  But the fact is, people with disabilities do need care, and the only way most can get care is to entrust their body to the government in order to ensure their life!  Some call it a choice, and in some sense I suppose it is, but it’s the only choice to stay healthy and/or alive!  So it’s difficult for me to see this as a free choice.

In a real sense here, the government is just responding to a genuine need, and that’s good. The government is not heinously putting people with disabilities up for sale, but that’s the end result when there is no competition in the market because the government is the main purchaser of care. and also sets the price for care of anyone with a disability who has entrusted the government with care of their body.  Any business wants to make as much profit as possible, while maintaining enough quality, to capture the lion’s share of the market.  When considering apples bought, if the market pays the same price no matter the quality, in order to make more profit, businesses would have to lower overhead while collecting more apples, yet keeping workers satisfied.  When speaking about actual apples, as long as apples pass the markets approval, one can skimp on the quality control of the apples, because unlike the workers, the apples can’t complain.

 

The Split In the Road – Big D (Acquired Disability) VS DD (Disability onset before age 22)

However, unlike apples, people can complain about not being properly cared for.  Here comes the split in the road when speaking of affectively receiving care in the desired manner.  For the reader, I want to explain I’m speaking of business concepts in general – the idea of generating profits for business.  I mean no disrespect or political incorrectness when referring to the differences in disabilities.  As a person with a Developmental Disability who has a speech impairment, I know firsthand, if agencies can shut you up and discredit you they will.  Whether out of malice or ignorance, it doesn’t matter, the affect is the same.  People with intellectual disabilities (including elderly people with dementia, those with head injuries, and those with DD/intellectual disabilities) have an increased difficulty in being heard, or worse, actualizing what they really want from services in order to create the life they desire.

However, when someone can effectively articulate something they’ve perceive not to be “right”, or that they are not satisfied with, its more cost and energy effective for a business not to impose too much into that persons’ everyday life.  For example; a person who receives care might allow a care worker to play on his computer while he forgoes a bath for that day, knowing he will expect them to drop him off at the ball game Friday. Care businesses strictly forbid care workers transporting their clients in the big D world, but to avoid getting in trouble with the government for no bath that day, business can and will turn a blind eye to certain things in the Big D world, and the consumer will tolerate some lack of care on the business’s part to compensate for getting some freedom.  It’s a mutual symbiotic survival dance, where each plays their part, although far from ideal for the consumer of the service, they each benefit, and the payer (the government) remains ignorant.  The “apples” are content (but not happy) and therefore quieted.  And the business providing care collects their profit.  This happens mostly in what is known as the “Big D” world.  In Ohio it’s Ohio Home Care Waivers (non-DD waivers).

In Ohio, most people with I/DD are under an entirely different system than the Big D population.  This means that the Ohio Department of Developmental Disabilities administers I/DD services and has their own criteria and standards for caring for people with I/DD. These standards set by the department are a little inflexible and too structured for my liking, but in general, it’s well thought out and has good intentions. Truthfully, many in this population are more vulnerable than the Big D population, and therefore need more protection from being taken advantage of.  Therefore this population is under a more scrutinizing system.  However, I would argue that this population is even more used for profits by the businesses who are providing care, and less likely to see the life they desire, under the current system where the government pays the agencies directly!

People with I/DD have difficulty either articulating their needs, wants, desires, or when they do articulate these things, they are so easily dismissed, placated or put on hold, that this causes them to become desperate and feeling devalued as if these things they desire don’t matter.  It is known when people are not valued or listened to it comes out in various forms of behaviors.  The DD professionals claim that there’s a high correlation between DD and destructive behaviors, but they fail to show a real organic link, all they know is, indeed, these people are acting out, making it difficult for direct care workers to implement routine for care.  This poses a problem for the business because they either have to pay direct care workers more so they are more willing to work in these situations, which, of course, cuts into the business’s profit.  Or, get that individual to behave so they will be easier to maintain. If they actually listened and carried out what the person with DD wanted like; basketball on Tuesdays, Marco’s Pizza Friday, etc. that person would be happy and therefore have fewer issues, but again the business might have to raise the pay to direct care workers because they will be doing more than just maintaining a body in a single environment.  They will actually have to engage this person in society with all its’ joys, failings and disappointments.  So what has been done by this business to keep profits up and keep people with DD from telling them, with their behavior, that they are not satisfied with the way things are going?  Create a whole new industry to profit off people with I/DD’s dissatisfaction called “Behavioral Supports”!

 

Behavioral Supports

Are there some people with DD who have behaviors directly connected to their diagnoses?  Yes!  But there are some people without DD who have behavioral disabilities too, how are these treated, or not treated?  People with DD who have true organic brain disorders which may cause dangerous behaviors (behaviors that may hurt them or others, but are not connected to communication issues and/or oppression) need services to assist them in managing their life with these behavioral disabilities, but behavioral disabilities are not as prevalent as the DD professionals claim.  A significant amount of behavioral issues are not an organic disease, but the inability to: communicate affectively, cope with, or overcome daily oppression, and the sadness of forever being under someone else’s control – with no foreseeable avenue of escape.  Living a lifetime in these conditions would drive a non-disabled person to extreme behaviors, so why is it so naturally expected that people with DD should just except this as their fate in life without a fuss!?

Behavioral Supports are often used on people with DD who are disatified with services and those who control their life.  These so-called “supports” range from quietly taking the person with DD who’s flailing around (probably cause they’re unhappy about something unfair) to a quiet place out of sight of public eyes (how they get that person to cooperate and leave, well that’s a good question?), to putting them on high doses of psychotropic drugs to make them compliant with things they object to (i.e. so they can’t/won’t complain about being put to bed at 8:00).  But it’s all done under the guise of health & safety reasons of course.  Oh and if someone constantly throws a fit, after being put off for six months, about desiring fewer care workers in their home – they get MORE care workers in their home.  So, I’m not saying this happens, but just think about this from a business standpoint, if per se, a business that provides care, thought someone had hours in the day that were “unfilled”, and that they could profit from by filling with some type of “care”, all they’d have to do in the DD system is piss that person off for a few months, creating behaviors that did not previously exist, declaring they need more hours for health and safety reasons, which in turn escalates these behaviors!  It could escalate to the point where the person feels hopeless because no matter what they say or do, no business people listens to them enough to change the situation to the way they want, so the person becomes depressed and suicidal. This person with DD gets labeled with a mental illness.  Now they have a “dual diagnoses” which more businesses can profit from.

 

Enslaved to Create Profit

Unlike most things, needing some level of care for daily living is not a choice, it’s a necessity.  People with disabilities and/or their families can’t just forfeit care because it’s bad, or boycott the care businesses until they get what they desire from these services, they would suffer and may even die without daily care – so some “undesirable” care is better than dying.  The care businesses know demand will be there because disabled people need care every day, therefore in some respect, they are indebted to them for their life, at least the way it is currently. As it is now most enslave people with disabilities for profit.

I’ve heard with my own two ears these businesses say to individuals who request certain things like, fewer hours of care in their home (DD system calls it “more alone time” as if it were a privilege to be earned, rather than the norm): “Oh just let them (the direct care worker) sit on your couch all night – you won’t even know they’re there”.  One person I advocated with explained, the best she could, about what being independent meant to her, in that she doesn’t feel independent when someone’s there at night.  I thought she did a beautiful job explaining it (plus she really had no need for them there), but they (the business owner, as well as her SSA) could not grasp that.  All this business owner could process was, if the IO Waiver was willing to pay for her to have overnight care, why would she want to give that up?!  The owner of that care business attempted to say that her view of “independence” was somehow flawed (I stopped them).  They just saw huge profits going down the drain with a person who was easy to care for, and that it really wasn’t going to “hurt” her to have them there at night. They viewed it as a win/win situation and just could not understand why being alone meant so much to her.  This business owner was really pushing her, and the county board worker?  Well, not much help.  Had I not been there – I’m not sure what would have happened.  In her case, she’s down to 6 to 8 hours a day of the 24 hours she had the first few years.  Since she’s down to the hours she desired and lives with no roommates she’s finally happy and it’s worked beautifully for 3 years!  Even her family is happy and proud of her.  They just couldn’t picture her doing these things because they always cared for her, so they just didn’t know what she was capable of when given a power wheelchair as well as an accessible environment.

I realize not everyone is like this woman, but the point is, the care business stood to make tons of profit off her.  They knew that cognitively she was normal, so they tried squashing her desires with their profit driven (twisted) logic.  Since she had a disability with a speech impairment, the owner of the business, by attempting to convince others that her perception of “independence” was flawed, would affectively silence her.  That was the owner’s goal in order to get what HE claimed best for her.  Of course, it was really about protecting his profit line.  Taking away the little voice someone does have is not an isolated incident – it’s the norm.

To summarize as long as the current government system remains “as is” in purchasing long-term care” for people with disabilities, these people will remain disempowered, impoverished and enslaved by the system that “cares” for their daily living needs.

 

What Is The Solution?

Why not put the money that the government gives out to various disability agencies on behalf of the individual with a disability, directly into the hands of that person, their family, guardian and/or fiscal agent of the individual’s/family’s choosing?  This may seem radical, and maybe it is, but it would save literally billions in tax monies. It would drastically cut government departments in disability related services probably by a third.  Also, it would put the responsibility and power back where it belongs – in the hands of the individual needing the services.  No need for food stamps or government subsidized housing for people with disabilities because the subsidy would be in their bank account, plus a little extra upfront if one needs accessibility modifications.  There would be a change in what are now classified as “case managers”, such positions would become “resource brokers”, “information specialists”, etc.

So am I advocating that the government just hand over a check carte blanche every month?  No! There would be an individualized budget developed in accordance with ones level of disability and their needs pertaining to their particular disability.  These budgets would set parameters for housing, transportation, job skills/readiness/coaching, home maker/personal care services, fiscal agent, etc, but yet be fluid within that total set amount.  For example, someone who works from their home may want to take money from transportation and place it in the housing budget allotment because they have need for more square footage, and less need for daily transportation.  Someone may want to pay their attendant more per hour and receive fewer hours.  These budgets would not have a “one size fits all” approach but be tailored to the individual and can change as the individual’s life changes.

To have the monies in ones’ possession, one would also have to have special training paid for from their budget, or as part of high school transition planning. This training could include; record keeping, keeping receipts, audits, understanding and living within a budget, managing workers, business etiquette, etc. Or one can opt to pay a nominal fee from their budget for a fiscal agent of their choosing to take care of the business end of their budget, but they would still work with the resource manager and fiscal agent to set up budget allocations, choose housing, job, hire homemaker/personal care attendants, etc.

 

Fraud And Abuse

I can hear the cringes of people worried about fraud and abuse if money for living and care were placed directly into the hands of those who utilize these services on a daily basis.  My answer is seriously?  Look at the massive fraud and abuse right now!  I mean ABUSE of people with disabilities in a system where care businesses get money directly from the government!  Although there’s massive paperwork to ensure care is taking place by businesses checking boxes, there’s little daily oversight on individual by individual basis to ensure someone didn’t just check the boxes and collect that money for that care that did not happen that day.  For one to say, people who need care and/or their family (who have the required training above), would be more fraudulent or abusive than the care businesses are now, would be ignorant, if not discriminatory!  Will there be fraud and abuse?  Certainly, because people will be people, but there will be no more fraud than the care businesses engage in now. It is conceivable that there will probably be even less fraud, and better care of most because people will expect more since they are paying directly.  It will empower people with disabilities to ask for, and receive the type of services they desire.  It also encourages responsibility rather than dependence.

The type of fraud and abuse I’m concerned about is those businesses who will take advantage of disabled and elderly by getting money for building a shoddy ramp, but there’s ways to decrease the chances of this happening.  Plus stiff penalties for those who knowingly and with forethought took advantage or exploited an elderly or disabled person.

 

To Make This Happen What Would Have To Change?

In the U.S. government assistance does not go by “need”, it goes according to level of family income.  We assume in the U.S. money cancels out need.  If one is not extremely poor they don’t deserve any assistance.  This is of huge importance to understand because if a minority group can be kept in poverty, they have very little power.  For people to get the resources from the government into their bank account in order to pay for housing, personal care, etc. income and asset limits would have to be eradicated. According to the spreadsheet the average cost to government per year for someone with DD to live in the community (it’s higher for an institution) is around $61,000.  This cost is a little less for the big D population because the average Waiver costs is less, but the cost for the other categories is similar.  Of that $61,000, only $8,600 goes into the persons’ pocket.  But wait, of that $8,600, nearly a third is mandated towards subsidized housing, leaving a little over 6 grand a year for; food, clothing, utilities, recreation, etc.  No worries about anyone running for elected office on that!

$ Spent on behalf of	Per month	Paid by individual	Per year
Average DD Waivers Costs	2,446.08		29,353.00
1 bed section 811 housing	808.00	2,880.00	9,696.00
SSI	721.00		8,652.00
Sheltered employment/day hab	605.42		7,265.00
Voc rehab	167.00		2,000.00
Food stamps	77.00		924.00
Transportation	250.00		3,000.00
Average total spent to benefit people with DD	5,074.50		60,890.00

 

This table reflects the average.  Some who have high needs and require 24 hour care, these cost can be up to $200,000 a year.  If people with disabilities, or if they are cognitively unable, their parents or someone who truly cared about that person, had this type of money to spend in the market for their daily living needs, this whole world would literally change.  Businesses would be seeking to please and accommodate people with disabilities!

I was always good with money, even when living on SSI I could manage to save between $500 to $700 per year in the 1990’s while receiving $430 to $500 a month with rent, phone, cable, public transportation, food and a 12 pack of the cheapest beer I could find, all coming out of that $430 to $500.  Those of us living in public housing were all below poverty level, but being on SSI, I was probably one of the poorest there.  It bugged me that I was the poorest, but others always seemed more desperately in need than me and would seek my monetary help, which I would help when I could.

Once, when I was lamenting to a priest about loaning money to an individual and how I’d probably never see it again; he explained to me a valuable lesson that has stuck with me; 1) Never give what you can’t afford to lose.  In other words, he was saying, don’t give if it could cause you to become homeless or starving because then you will be unable to help others.  However, if you are just going to feel a pinch, than that’s your decision whether to help them or not. 2) Don’t help from a feeling of guilt or pity, but from the sense of empathy of the individual’s need.  And give cheerfully.  3) IF you decide to give (loan), money or anything else, give without any expectations – no strings attached.  In this way, one is free from the burden of making sure it’s used as expected.  Although the government has a responsibility to ensure taxpayer’s money is used wisely, and therefore is charged with setting criteria for proper use (no illegal drugs, decent housing etc.), I still think when it comes to assisting the disabled or elderly, the government could adhere at least to the sentiment of the priest’s wisdom.

If the tax payers/government chooses to spend money on long-term care for the elderly and persons with disabilities, than why not give it directly to individuals, or their family members?  This would not only empower people with disabilities live free lives in the manner they desire, as well as making their own decisions in life, but it would save millions in government departments.  People with disabilities and/or their families’ would also be charged with that awesome responsibility.  People are eternal adolescents until they are responsible for their own life!

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