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 Response Page - Harpstead / Reichgott Junge  Interview -      


These comments are responses to the questions listed below,
which were generated in regard to the
Jodi Harpstead / Ember Reichgott Junge Interview of
09-30-2011.
 

Overview

Jodi Harpstead, CEO, and Ember Reichgott Junge, Vice President, Lutheran Social Service of Minnesota, contend that State laws overemphasize protection of persons with disabilities at the expense of their quality of life. They believe that people with disabilities should be allowed to design their own lives, accepting more personal risk. They prefer that disability-related funds be given directly to individuals and their guardians allowing them to choose their own levels and types of care.

For the complete interview summary see:  http://bit.ly/t9qvRQ

Response Summary:  Readers have been asked to rate, on a scale of (0) most disagreement, to (5) neutral, to (10) most agreement, the following points discussed by Harpstead and Reichgott-Junge. Average response ratings shown below are simply the mean of all readers’ zero-to-ten responses to the ideas proposed and should not be considered an accurate reflection of a scientifically structured poll.

1. Protection focus neglects quality of life. (6.9 average response) State laws and regulations for persons with disabilities overemphasize protection as contrasted with enhancing quality of life.

2. Self-determination should be allowed. (7.3 average response) Persons with disabilities should be allowed to design their own lives instead of having their lifestyles determined by standardized practices.

3. Pay individuals, not providers. (7.1 average response) Rather than paying vendors directly, disability-related funds should be directed to individuals and guardians to allow them to choose their own levels and types of care.

 

Response Distribution:

Strongly disagree

Moderately disagree

Neutral

Moderately agree

Strongly agree

Total Responses

1. Protection focus neglects quality of life.

4%

4%

21%

54%

17%

24

2. Self-determination should be allowed.

4%

0%

17%

58%

21%

24

3. Pay individuals, not providers.

4%

0%

29%

42%

25%

24

Individual Responses:

Ray Ayotte  (7.5)  (10)  (7.5)

Bert LeMunyon  (5)  (7.5)  (7.5)

1. Protection focus neglects quality of life. Lacking knowledge on this subject, I wish the presenters had given some examples of present care versus care that enhances the quality of life.

3. Pay individuals, not providers. Accountability for the use of funds would be necessary to be sure that positive results are obtained and funds are not wasted.

Virginia Eernisse  (10)  (10)  (10)

1. Protection focus neglects quality of life. These regulations and laws have created the Disability Industrial Complex that is not focused on the person, but on the provider and how they can make the most money.  Here in Texas I am not sure that safety has anything to do with it any more, but is an excuse to employ typical employees to say what individuals need, and can "qualify" for but have no authority to change anything about the person's life that the person needs or wants changed.

2. Self-determination should be allowed. In my experience (over 45 years) as a volunteer advocate I have found that the model we have here in Texas encourages exploitation of the individual by not only the system, but by the families.

3. Pay individuals, not providers. If this is done right it is the only way to go, for a person to "get a life".  Again, here in Texas the Guardianship issue is an ugly mess still.

Anonymous   (5)  (5)  (5)

1. Protection focus neglects quality of life. Without a few simple examples it is impossible to evaluate the suggestions.

2. Self-determination should be allowed. Lack of familiarity with the alternatives makes evaluation difficult.

3. Pay individuals, not providers. Not familiar with how evaluation of disabilities are made.

RC Angevine  (7.5)  (7.5)  (5)

2. Self-determination should be allowed. I agree but also feel that there should be some assistance available to aid them in these choices and to help guard against those that might prey on them.

3. Pay individuals, not providers. I would need to better understand how this process would work and what would happen in those cases where the funds were spent foolishly.  Who would then pick up the responsibility? How would the process handle that type of situation?

Bruce A. Lundeen  (7.5)  (5)  (5)

2. Self-determination should be allowed. Because of their disabilities and lack of exposure some of these people are incapable of understanding some implications of personal decisions and need guidance.

Dennis L. Johnson  (7.5)  (7.5)  (7.5)

1. Protection focus neglects quality of life. What disabilities are being proposed? Not clear whether for physical disabilities only, whether the developmentally disabled are included, whether this could extend to those addicted to substance abuse, sexual deviants, etc.  Appears to open the door to massive cost increases despite appeals of self-determination of lifestyle.

2. Self-determination should be allowed. Agreed in principle but there are many pitfalls in practice, especially for those requiring guardians or relatives to receive funds. Programs such as this, advanced to reduce costs and improve the choices of disabled, inevitably wind up costing more and more as the net is drawn wider and wider to cover more and more individuals. How will costs be controlled?

3. Pay individuals, not providers. Questions about how abuses will be monitored. Funding through agencies, especially through faith-based agencies is more easily monitored. Individuals can more readily game the system to use funds for the disabled inappropriately. There have been many examples recently of this being done by guardians, etc. because of problems with monitoring, with SSI funds and others.

Chris Brazelton  (5)  (5)  (5)

1. Protection focus neglects quality of life. The discussion did not include a clear definition of terms or sufficient background on these issues in order to generate an informed opinion.  In what ways do the laws overemphasize protection?

2. Self-determination should be allowed. The discussion did not include a clear definition of terms or sufficient background on these issues in order to generate an informed opinion.  What are the standardized practices?

3. Pay individuals, not providers. The discussion did not include sufficient background on these issues in order to generate an informed opinion.

Don Anderson  (7.5)  (7.5)  (7.5)

3. Pay individuals, not providers. Main problem would be: can the disabled individual have the capacity to make the right decision?

Peter Hennessey  (5)  (7.5)  (7.5)

1. Protection focus neglects quality of life. On the one hand this is a distinction without a difference. On the other hand, the distinction, if taken seriously, easily leads to stupid abuses. If my concept of the quality of life includes taking a trip to NYC for a week, rather than pay for my care or therapy, then someone must put their foot down to do the right thing by me. The problem with needs is that they are infinite, while resources are finite.

2. Self-determination should be allowed. Having had personal experience in this with a few family members in various stages of temporary or permanent disability, I'd say this is one area where you must make accommodations for the specifics of each individual case. However, the one common factor applicable to everybody is that no person with disabilities can manage without support from family members. Paying professionals for the equivalent level of service and support is impossibly expensive.

3. Pay individuals, not providers. I agree in principle. I'd much rather see aid based on individual judgment and responsibility. However, I can just hear the screams from the establishment types that it will be impossible to apply necessary controls to prevent abuses, and then the state is stuck with additional costs. The sad fact is that recipients of government aid tend to spend their money on things other than the intended purpose. The other sad fact is that there is a general attack on the concept of "fee for service" and an effort to substitute "payment for outcomes," as if anybody in the health care field could possibly guarantee outcomes other than the fact that eventually we all die from something, regardless of what the health care providers do.

Dave Broden  (10)  (10)  (10)

1. Protection focus neglects quality of life. If the focus is on quality of life many of the protection issues will go away. One observation I have is that often there is no effort to help the disabled make a choice. They are just told what they can and should do. Increased focus on individual decisions with recognition of the individual limitation will be beneficial.

2. Self-determination should be allowed. Standardized practices are constraints and set the stage for lower quality in all cases.

3. Pay individuals, not providers. Individual and guardians will always make a better decision for the individual -- there must be some sort of floor or guideline, but structure is constraining.

Bert Press  (0)  (0)  (0)

Chuck Lutz  (10)  (10)  (10)

Paul and Ruth Hauge  (7)  (8)  (9)

Although perhaps quite expensive to make the transition, our treatment of the disabled has improved greatly in recent years, yet much must be done to allow them to be active members of society.

Wayne Jennings  (9)  (9)  (9)

Bright Dornblaser  (10)  (8)  (10)

Tom Swain  (5)  (5)  (5)

Kevin Edberg  (6)  (7)  (7)

Al Quie  (7)  (8)  (10)

Carolyn Ring  (8)  (7)  (5)

All of these questions depend upon the individual and his/her capabilities. It should not be a one-plan-fits-all.

Lyall Schwarzkopf  (8)  (7)  (6)

Tom Spitznagle  (7)  (10)  (10)

We have a family member who lives in a group home and have experienced firsthand the inflexibility of the government's social services "world" that can result in inappropriate levels of service for disabled people and considerable waste of limited government funding.  Some new thinking is definitely in order.  This is not a reflection on the many dedicated service providers who do the best that they can within the constraints of the government's social services system.

A.W. Rosen  (8)  (8)  (6)

Concern that there may be increased fraud with little oversight

Amy Wilde  (4)  (6)  (5)

Although this is a good idea in theory, in reality, many people with disabilities lack the skills and/or knowledge to make all decisions for themselves. Some are educated & perfectly capable of making independent decisions. But others rely on caregivers, family or guardians who may or may not have their best interests at heart. There are also limits to what can realistically be paid for by taxpayers--for example long-term, 24/7 individual nursing care is cost prohibitive. Also, the competency of guardians or the disability may change over time. At some point a neutral party, such as a county caseworker, may need to intervene. Abuse could potentially be an issue regardless of whether the abuser is a paid caregiver, a bureaucrat, or a supposedly loving family member.  Self-neglect also happens. People w/disabilities should not be managed solely by the government, or by their guardians or, because of financial, mental and physical limitations, even by themselves without some level of oversight. Some level of possible "redundant" oversight, where government and guardians keep an eye on each other, may help keep people from falling between the cracks of our fragmented care system.

    

The Civic Caucus   is a non-partisan, tax-exempt educational organization.   The Core participants include persons of varying political persuasions, reflecting years of leadership in politics and business. Click here  to see a short personal background of each.

   Verne C. Johnson, chair;  David Broden, Charles Clay, Marianne Curry, Bill Frenzel, Paul Gilje,  Jim Hetland,  Marina Lyon, Joe Mansky, John Mooty,  Jim Olson,  and Wayne Popham 


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