JB Rocks. RT @SheilaKihne: LOVE @JanetB4RNC mailed lit piece reads: "We win. They lose. Beat the Democrats" Happy to support her...Sat
As conservatives, we value the free market, personal responsibility, and limited government. I also subscribe to these principles. However, I live with cerebral palsy. It’s saddens me that we are not talking about a comprehensive policy for the millions of Americans that go through life with a disability. It angers me, however, that this is true of both sides of the aisle. No one is talking about the needs of the disabled. Throughout history, we have been seen as being either punished by God or special angels, people that need to be cured, or nuisances.
Through my own experience and analysis, I will attempt to describe the current problems as I see them. I will also offer a critique of some current views by other conservatives. Finally, I hope to present a framework to encourage discussion and, hopefully, lead to creation of a more unified and conservative plan for the disabled.
The Current State
Who Are These People
According to the 2000 census 49.7 million people reported having a disability (Waldop & Stern, 2002). One could write volumes about the make-up of this group. However, for the sake of simplicity, the ratio of 1 in 5 people having some kind of disability is a good measure. Before we get too carried away on numbers, keep in mind that this includes physical, emotional, developmental, and learning disability. We would be right as well in saying that both in general and with specific diagnoses, the phenomenon of disability is “not an equal opportunity” idea. For example, on paper, my wife and I both have the same disability, spastic athetoid cerebral palsy. Yet we could not be more different, I can walk, she can’t. She is prone to seizures, I am not. She is more understandable speaking, I am harder to understand. The list can go on.
However, we must examine this issue from the perspective of public policy. Overall, at this time, the disabled are seen either as “clients” or “patients” or need “services” or as “dollar signs.” In the first case, often called the medical or human service model, the safety and well being of the individual is primary. Here, there is a tendency to “pre-package” services into a one size fits all approach. Since people with disabilities have different needs, not everyone will need the same set of supports. Yet as we will see later, this approach can lead to more loss of control over personal life.
The second view is more of a knee jerk reaction to the first. Under the current state, support services with disabilities are costly. There is no way around it. Naturally, we believe in a low tax burden. However, what can happen is that only the numbers that are in the budget. The natural tendency is to cut the number which, in turn, can leave disabled individual worried about getting needs met. In addition, it fosters the notion the the disabled are drains on public resources or objects of charity, further preventing an inclusion of the disabled in society.
Run for Your Lives, The Fear Mongers are coming!
To aggravate things, the disability community is often, in my opinion, the number one victim of fear mongers. Now we are not talking about creating fear in society in general. Rather, the fear is created among the disabled. Here’s how it works. The fear monger, who will call themselves an “advocate”, will go to select groups of people, usually the older disabled, once any change in budget or policy changes and use the fact that they may have been institutionalized. They will use lines such as “If this happens, you’ll be back in an institution or a nursing home.” False information can spread in any group. Among the disabled, it spreads like wildfire. Rumor becomes fact and blame is assigned, usually at us.
Also, self proclaimed leaders of the disability community have promoted the concept of “disability culture” mostly to preserve an identity among disabled people. As someone who has to fight daily just for the right to be treated as an equal there is some value to having a group identity, preserving our history and create a direction for the future. I would argue, however, that this gone to an extreme where past abuses as justification for an entitlement culture. Thus, any program cut is fought vigorously. For example, there are some that believe a disabled person should stay on disability payments because they are a form of “restitution of all the abuse of the past.” I know it sounds strange, but it’s out there.
Now before I alienate every advocate out there, let me say that there are many good people representing our needs before policy makers accurately and I applaud them for their work. We would not be where we are today without them. But to use fear to argue a specific agenda is nothing less than abuse of trust and power.
Disjointed Delivery, Mixed Messages
An individual with a disability will need extra support services in order to remain as independent as possible. It would seem logical to have these services administered through a central agency. Such is not the case. Each program is housed in a different agency, with its own systems, rules, and procedures. Further contributing to the problem, both governmental and private sources send mixed messages to the individual, at times leaving more questions than answers.
Without being specific, let’s use an example from my experience. Like most people, I like the idea of being self supporting. That means going to work. Here, there is good news. The state department of vocational rehabilitation, mandated by the Rehabilitation Act of 1973, as amended, is there to help by paying for training, equipment, accommodations, and other items needed for me to be successful in my career. In fact, there goal is to have me work as much as physically possible at a competitive wage, which means paying taxes and increased purchasing power. Sounds great, right?
But wait just a minute. Things may not what they seem. I require personal assistance services. This is a program where someone comes in to help my wife and me with needs like bathing, cooking, eating, dressing, etc. Now I do have insurance through work. However, private insurance will only pay for a service for treatment, not for prevention or maintenance of health or independence. But Medicaid will pay, if you meet there income and asset guidelines.
Now there are new work incentives for people with disabilities. Most significant is Medicaid buy-in, which allows a working person to pay a premium, provided they meet certain requirements. to “buy their way back” into the system. However, housing prevents another roadblock. There is a huge shortage of accessible, market rate housing. For most people, this forces reliance on the Section 8 housing system. Again, income and assets restrictions are required to qualify. Not only does this mean income has to be forgone, but it is impossible for a person with a disability to save for a down payment on a house. In addition, the extra reporting and re-determination requirements are time consuming as well as an invasion of privacy. The bottom line, people with disabilities is forced to choose no employment or under employment to access needed support services. What is wrong with this picture?
CATO and the ADA: Critiquing the Critique
As we work our way towards our framework, we can ask, “Why are more disabled people with us even given the above issues. After all, we are the side that believes that every person in important. They should recall that it was under the watch of George H. Bush that the Americans with Disabilities Act were signed into law.” Well, perhaps the biggest blow to our argument, at least from the disability activists view by some conservative groups view of the ADA as an assault of freedom. The most notable are the concerns of the CATO Institute. But, to what extent are these concerns valid?
Early on, CATO’s opposition to the act centered on costs and impositions freedom. While at the time of most of the literature was written, this may have been a valid concern. Yet, these concerns have proven to be almost a non-issue here in Minnesota, an issue that has received bi-partisan support. To be sure, as a state, we have demonstrated in various ways several of the objectives of the ADA can be easily achieved by innovative thinking as well as taking a rational approach to solving these issues,
Arguments made often center around inflexibility over job requirements, testing, and potential lawsuits due to discrimination (Huggins, 2001). As in many arguments which shall be discussed later, these concerns are largely based on a “worst-case” approach and protectionism, another model that sees the disabled as needing to be sheltered from the “real world.” Here, concern for the small employer should be noted. Some items needed may indeed be prohibitive. However, is it a function of the law, or society? A 2004 study done in conjunction with the Minnesota Department of Employment and Economic Development measured attitudes of employers of hiring people with disabilities. Sadly, many of the concerns raised by CATO were factors in hiring practices were mentioned as reasons for not hiring. However, many of these same employers, when given a list of available tax breaks and other resources available to them, indicated that they would be willing to hire someone, if qualified, with a disability. (Market Research International, 2004)
Huggins also notes that the disability can not be brought up or accommodations discussed until a job is offered (2001). This argument does have merit, keeping in mind that this prohibition is on BOTH the employer and the candidate. Under these conditions, it is likely that concerns over what it will need to “reasonably accommodate” the candidate may prevent an adequate evaluation of that candidate’s skills and qualifications. Where this really becomes a problem is for the individual who has no developmental or cognitive impairments. A better approach would be to allow for such a discussion upon “self-disclosure” by the candidate. By allowing this exception, the candidate can begin the dialog on how certain tasks might be accomplished. Again, using is as an example, I could point out that all my necessary accommodations for computer use are already in the Windows operating system. They just need to be turned on and configured to my personal settings, which I can also do myself unless company policy requires only tech support can configure a computer.
Most of the other concerns raised center around public accommodations. Here the concerns seem to center around transportation, with the main argument being that paratransit (Metro Mobility), would be preferred by people with disabilities and cause less hassle for the public via delays and loss of capacity (O’Quinn, 1991). Further, Huggins argues that the regulation of public accommodation not only increases costs, but makes it a kin to eminent domain. That is, direct infringement on the rights of property owners (2001). In response, consider the following:
- Most disabled people simply want to get where they want or need to go, usually by whatever means necessary. Here, what is being done is over regulation. The spirit of the law can be maintained while allowing local collaboration, including the disabled in the discussion, to find the right solution given the need.
- If the services of an establishment can be provided to a disabled patron without modification, no modification should be required. Otherwise, the most practical option should be considered “reasonable accommodation” by default. For example, a restaurant my wife and I visited in Montreal was not accessible in any way. I also noted that to make modifications would be impossible given the building and location. But, we had heard they had the best crapes in the city, so we really wanted to eat there. The solution was simple. Although it was not normal policy, they permitted us to do a “take out” order. While waiting for our food, the host informed us that was what they did for all people who could not come in because they were mobility impaired.
The rest of the concerns Huggins raises, due to the time that has passed since the written, can be debated as to whether or not they remain issues. However, the amount of litigation and complaints filed as a result of the ADA is upsetting. Here, two things need to be understood. First, as noted above, advocacy in the disability community has misplaced its priorities. To that extent, some of these actions have been so ridiculous; I do not wish to take time mentioning. Having said that, it must be noted that judicial activism has greatly expanded the scope of ADA. Clearly, the scope needs to be refocused and narrowed. Unfortunately, any ruling that does that is seen as a direct attack on the ADA itself.
Building the Framework
As we build our framework, we need to understand some key concepts. First, just by the nature of how disabilities affect people, it will be impossible to design a framework that will move everyone toward total independence. Convincing ourselves that we will see the day when there will be enough acceptance, enough technology, and enough programs in place where public support can be eliminated is fool hardy. Rather, our aim should be to provide the tools to make people as independent as possible.
Second, we also need to realize that as a society, old stereotypes still exists. Morality cannot be legislated. However, what we do need to do is work through the family structure to change attitudes and instill in our disabled young people that they do matter. They have the same right to set their own dreams and goals and pursue them. As an adapted sports official for the Minnesota State High School League, I can tell you that the tide is changing. Parents of disabled children are encouraging their kids to aim high. The more that continues that quicker society will change.
Third, we need to recognize that interconnectedness of the areas affecting people with disabilities. We cannot just fix one area and expect to see change. It will take a comprehensive approach to create the kind of change we want to see.
Finally, as we move though the four major areas of concern (employment, transportation, health care, and housing), I may offer suggestions. Please be aware that they are not recommendations for the legislation or official positions. Working through these issues is going to take time, creativity, and innovation. My goal is only to stimulate thinking and discussion among conservatives that will lead to a message we can take to the disabled community,’
Employment
It should be more than clear by now that work needs to be done from both the employer and the employee perspective. Clearly, employers, especially smaller firms, still have concerns about hiring the disabled. In the same way, many disabled people feel they can’t take a totally self supporting job because of loss of certain benefits needed to maintain access to vital support services.
The most important thing that can be done from the employer side to expanding tax credits for expenses relating to hiring persons with disabilities. That alone, however, may not be enough given the current misconceptions still floating around out there. Education, information, and resource data must be readily and easily available to the employer. This also must include identify possible work that can be done by people with even developmental disabilities. The restaurant industry provides an example. We are all familiar with the “rolled up” place settings in many restaurants (silverware rolled in the napkin). This job normally falls on the serving staff. However, wait staff must attend to their guests as well and may not have time to perform this duty. This might be a good task for someone with a disability to do. From a business standpoint, it provides the flexibility to keep the table setting on a continual “as needed” basis instead of pre-rolling these settings and running the risk of extra expense due to unused napkin that must be discarded.
For the employee, we must create an environment where work is the most beneficial option. Continuing and expanding work incentive programs, like Medicaid buy-in, need to be continued and expanded. The issue of wage is a controversial topic. Nonetheless, Vocational Rehabilitation Policy must reflect the successful closure of a case must include, to the extent feasible, employment at minimum wage. This would continue to the ability or using center based employment for those who need it and discourage tit’s use just to maintain certain benefits. It should be noted that center based employment is not the same thing as day training and habilitation programs. These are also important for those who need it, usually the most severely disabled. In no way am I suggesting that these people should be paid for attending a rehabilitative service. Tax credits and deductions should also be available to the individual to offset expenses that occur just from living with a disability.
Transportation
Here’s an interesting question: Why would someone switch from a system grounded in conservative, free market principles to system that has proven not to work? It sounds absurd, right? Yet, that is exactly what happened to Metro (IM)Mobility. Prior to 1994, this system was a voucher based system using managed competition to provide transportation to seniors and people with disabilities. The results were simple. People got transportation with very few headaches. In 1994, the switch was made to a central dispatch and call center with service providers based on area. News stories of the collapse were all over the news. Today, people that depend on the service still report having to call days ahead with no guarantee of getting the ride, delays, and poor service. Many that are more independent have abandoned the system for main line buses. Then there is out state, where transportation is almost non-existent, except for medical needs only. It would be easy to say, “Just get a van.” A reliable modified van, even for someone that does not drive, can cost up to $48,000/ Given previously stated restrictions on assets, it’s impossible to save for a down payment or acquire a loan at reasonable terms.
Given the current debate on transportation, the solutions are not so obvious. No transit or paratransit system will work if the highway infrastructure is deteriorating. However, we can no longer deny that these services are necessary. Innovative thinking will be needed. This includes creating incentives for the purchase of vans where it is practical. Nevertheless, we, as conservatives, must show that it is innovation, not funding, that can deliver these services.
Health Care
I do not wish to reveal which candidate I supported in the straw poll. But, when I think about it, maybe Governor Huckabee was right. We don’t have a health care crisis, we have a health crisis. Our current system not only is monopolistic, but, as stated before, focuses on health care after that fact (that is, dealing with a cause or symptoms after they manifest) rather than preventing the condition before it starts. Here’s an example. The department of human services will pay an amount, let’s say $12.00 per hour (I believe that is close to the reimbursement rate) for personal assistance services. Let’s also assume our disabled individual has been assessed at 10 hours of service per day since a power wheelchair is the only method of mobility. People like this can develop pressure sores if not given proper amount of time out of the chair. When a good PSA is working, the cost per day winds up at $120.00. Now, let’s assume that services are not adequate and sores develop, requiring hospitalization and bed rest. As we all know, a stay in the hospital runs into the thousands of dollars, even for only a few days. Add to that time at home on bed rest. The person cannot go to work, earn income, pay taxes, etc. Yet, private insurance won’t pay for these services as they are “maintenance” in nature.
Now, be must address why assistance services might not be adequate. Many reasons can be sited. Perhaps, the most telling is the continued liberal fostering of the “social service” model. The basic message is “We know what’s best for you.” Therefore, the system is structured with case managers, supervisory nursing, and restrictions on the types of services that can be provided. With each extra layer of bureaucracy, another cut from the $12.00 rate is taken, not to mention agency overhead. So, by the time it gets to the PSA, they’re lucky if they get $7.00-$8.00 an hour. I have found very few quality people willing to stay for that wage. The end result is poorly trained people sent out by the agency without an interview by the recipient. This leads to poor care. We do have an option caked PCA Choice. However, depending on your disability, this option will be discouraged at your annual assessment.
Housing
Perhaps the biggest area where improvement needs to be made is housing. Whether we are ready to admit it or not, there is an accessible housing crisis. Most of the accessible housing is found in government subsidized projects. While still preferable to instititutionalization, this method of creating accessible housing is in essence the same type of segregation. This has given rise to the term “handicap ghetto.” On the market side, such housing is almost non-existent. With the amount of renovations required, depending on need, either landlords or condo associations may be wary of the investment. The same costs would be prohibitive for the buyer already constrained by other needs. These renovations are often unfeasible in older homes, which also affect the elderly wishing to remain in their homes rather than go to nursing homes.
There are many possible solutions. Some examples are as follows: changing tax code to bring disability related improvements out from the medical expense category in order to make them available without itemizing, tax breaks for construction of accessible housing, promotion of universal design as a best practice, and further encourage private and non-profit partnerships, such as the recent Habitat for Humanity and Courage Center that allowed Lisa and I to become homeowners. Further, HUD should explore ways to build smaller, scattered site units rather than large apartment complexes.
A quick word needs to be said about group homes and shared housing. Not many people like to hear that a group home is moving in. Images of constant problems creep into are thinking. However, as we already have discussed, support services should fit the level of disability. There will always those who will require a more structured setting. Yet, the Supreme Courts ruling in Olmstead v L. C and E. W (1999) mandates the most integrated setting possible. On the other side, it is noted that there are those in both the group home as well as the home care industry that are placing the health and safety of those in their care in jeopardy all in the name of money. While government cannot do everything nor should it burden people with regulation, it must safeguard its citizens, especially the most vulnerable. This will be a tough issue to handle as it is an issue that requires changing thinking rather than policy. It is a dialog that must happen and is well over due.
Conclusion
As I stated in a recent blog, 70% of persons with disabilities say they are more likely to vote Democratic. The paradox is that voting in this way perpetuates a system that continues to oppress and keep them from reaching their full potential. Yet, because fear is such a driving force and it is well known that living with a disability can be expensive as well as frustrating, the cycle continues.
This should be seen as an opportunity for conservatives. Overall, we have the more positive message. It is a message of independence, inclusion and empowerment.. We must, however, start defining a policy and an agenda that is practical while addressing the legitimate concerns of the disabled. The ideas I have presented are not the only options. Rather, they are starting point. The opportunity lies before us.. Now is the time to take advantage of it..
References
Huggins, E. L. (2001) Handicapping Freedom: The Americans with Disabilities Act
CATO Institute Retrieved 4/21/2008 from
http://www.cato.org/pubs/regulation/reg18n2e.html.
Market Research International (2004). Employer Focused Research of Employment of
Persons with Disabilities: A Study on behalf of the Minnesota Governor’s Developmental
Disability Council, Minnesota Department of Employment and Economic Development,
Minnesota Department of Human Services, and Minnesota State Council on Disability.
O’Quinn, R. P. (1991) The American’s with Disabilities Act: Time for Amendments. CATO
Institute Retrieved 5/7/2008 from
http://www.cato.org/pub_display.php?pub_id=1018&full=1.
Waldrop, J. & Stern, S. M. (2002). Disability Status 2000: Census 2000 Brief. United Sates
Census Bureau. Retrieved 4/21/2008 from
http://www.census.gov/prod/2003pubs/c2kbr-17.pdf.
