Developing Community Supports

Volume 4, Issue 1
Winter 2004
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Developing Community Supports:
An Interview with Charles Priest
Executive Director, Alabama Head Injury Foundation
Interview by Joanne McGee, Ph.D., L.S.S.P.
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Dr. McGee: As you know, the theme of this issue of Premier Outlook is Bridging the Gaps. Alabama Head Injury Foundation (AHIF) has accomplished a great deal in that regard for individuals with brain injury in Alabama, particularly in building a network of support at the community or grass roots level. Hopefully our readers will be able to learn from your accomplishments and extend needed support to their own communities.

Mr. Priest: I think it is most appropriate to discuss our Community Support Network (CSN) in this issue of Premier Outlook because the theme is Bridging the Gaps and that’s exactly what the CSN is all about--filling gaps in the return to home and community following a traumatic brain injury (TBI) and building bridges to access support from the community.

Can you provide an overview of the history of the Community Support Network (CSN) for our readers? How did it all begin?

As with most of the state brain injury organizations, the core services of Information & Referral, TBI education, and support groups were the first to develop. The members of the support groups helped identify the need for a CSN and, most importantly, helped us understand the limitations of support groups as well. All too often, too much is expected of these groups. Their primary function is to provide emotional support and information. The support group can lose its focus if the members are expected to fulfill the additional roles of service coordinator, fundraiser, legislative advocate, governing body, etc.

So the AHIF saw the need to broaden its role?

Yes. In the late 1980’s and early 1990’s, the Alabama Head Injury Foundation realized that supporting community reintegration of people disabled by TBI was a role for our organization. So in 1991, as a result of some strategic planning efforts, our Board of Directors adopted the goal of developing a program of “coordination of services”. The first service coordination pilot sites were in Huntsville in north Alabama and Mobile in south Alabama. They were established in 1992 with federal funding from the University of Alabama-Birmingham Southeast Comprehensive Head Injury Center, one of the eight regional brain injury center projects funded by the Rehabilitation Services Administration (RSA) of the U.S. Department of Education.

AHIF hired two full-time Resource Coordinators with training in TBI and placed them in Huntsville and Mobile, Alabama. The Coordinators were simply to help individuals with brain injury as they returned home to reintegrate into their community and into society. The primary services they offered were local information and referral. They acted as advocates, by identifying and accessing services. Navigating the “maze” of social services was critically important. Additionally, they helped facilitate and helped out with some of the support group activities and the development of other recreational activities.

After the initial federal funding from University of Alabama-Birmingham and RSA expired, we looked to the State Developmental Disabilities Planning Council to help enhance the program and to expand it from two sites to five sites. So our Alabama Developmental Disabilities Planning Council helped to fund the expansion of the service coordination program.

How were you able to secure their support in the project?

They were willing to support the project because of their interest in systems change. People with TBI were, and still are, considered an underserved population within the Developmental Disabilities Act.

There are other disabilities that, while incidence is much lower, are more “high-profile” or have the media and public attention. How did you educate these public service organizations regarding the needs of persons with brain injury in order to obtain such a great collaborative response?

With regard to the Developmental Disabilities Planning Council in Alabama, we utilized our consumers across the state to attend their public hearings. Many state agencies hold hearings to garner public input on what their state plans should include. In 1990 and 1991 we were able to get a large number of individuals with brain injury and their family members, as well as professionals, to testify at these public hearings. They were present in hearings in cities across the state of Alabama to help emphasize the need of this growing population. That had an enormous impact on the Developmental Disability Planning Council because, as they reported, we showed up in more numbers than anybody else. As you may know, the world is largely ruled by those that show up!

How did you identify this group and bring them together?

The unique thing about having a Service or Resource Coordination Program is that you start to identify those individuals that are receiving services, and they are able to help you in your advocacy efforts. Our Resource Coordination Program serves over 1,400 people each year across the state. That continues to increase our mailing list, so we may now have in excess of 5,000 people with brain injury and their family members that we can contact if we need them to advocate for a specific issue.

How long did it take to get the Resource Coordination Program in place?

The Developmental Disability Council helped to fund the program for two years and expanded it to five sites, but that funding started to expire. At about the same time we were involved in an initiative in our state legislature to increase drunk driving fines and direct the increased fines of $100 per Driving Under the Influence (DUI) conviction to a special fund, a dedicated fund for individuals who experienced neurotrauma with brain or spinal cord injury. This fund is called the Impaired Driver’s Trust Fund. We were successful in passing a package of laws to put that fund in place in the mid-90’s. By the time the Developmental Disability Council funding expired, the Impaired Driver’s Trust Fund picked up. It continues to fund the Resource Coordination Program, which has now expanded to ten sites across the state of Alabama. That has been the development of the Resource Coordination Program: first, a federally funded pilot project in two sites; then a Developmental Disability Council funded initiative allowing expansion to five sites; and now a ten site program funded by state dollars, fueled by DUI fines. Those ten sites, with ten coordinators, serve over 1,400 individuals annually by providing information, referral, advocacy, and emotional support. But they go beyond that. The Coordinators also help represent the issue of TBI within the community by increasing public awareness.

They conduct speeches and provide in-service training in their local areas. They also help individual clients with basic human needs such as food, shelter and medical supplies. They don’t have a lot of money to work with, but they are pretty adept at working with the local community to provide assistance. We capture the value of that. We call it “local resources generated”. Whether it’s a donated piece of medical equipment, pharmaceuticals, discounted dental services, or even a cash donation to help fund someone’s Christmas, we capture it. This past fiscal year the Resource Coordination Program was able to generate $491,000 of locally donated/discounted goods and services for our clients. That’s almost half a million dollars! The reason we are proud of that accomplishment is that even during tough economic times, it exceeds the amount of money it takes to have the Resource Coordination Program in place. So it’s a good investment for the state of Alabama. Being able to report on those leverage dollars helps the legislature and the administration in our state to realize that it’s a cost effective program, as well as beneficial to the persons served.

Are the other programs that you sponsor funded under other grants?

The Impaired Driver’s Trust Fund is the core funding for the majority of our community support network, however, it is limited as well. So we have reached out into the local communities and asked them to help continue and expand some of the support services. For example, in Tuscaloosa, Alabama, the United Way and some very generous local donors have helped us to expand the Respite Program to individuals in their area, as well as start one of our social/recreational programs called Small Places, held in a local church. In Selma, Alabama, we have a Walk-a-Thon that helps raise funds for the local community support network. Community foundations have also been a source for funding. In Anniston, Alabama, a local community foundation (the Calhoun County Community Foundation) provided seed money to start a social recreational program in their county. We are not only sending Coordinators to local communities, trying to get neighbor to help neighbor, church to help neighbor and so forth but we are asking the community to help raise funds to continue and expand the community support network, as well.

How long did it take to get the network in place?

In my opinion, the CSN is still evolving as we learn more and as other services surface or evaporate and the need for us to respond changes. For example, we began by referring to our Resource Coordinators as Service Coordinators but realized that was a misnomer as the primary responsibility of a Coordinator is to help develop and access resources, not just use existing services as in typical case management models.

How many paid positions does AHIF have and are paid employees primarily involved in Resource Coordination?

We have a staff structure that is very departmentalized. Our community support network involves ten full-time Resource Coordinators who have training in brain injury and come from a variety of backgrounds. Some are social workers, some are licensed counselors, and some are from the mental health system. We even have one Resource Coordinator who is an attorney. Over half of them have a disability themselves or have a family member that has a disability. They can empathize with the families they work with and the families may see them as a little more credible, so it breaks the ice. Our Respite Care program has one part-time coordinator and we have contracts with 20 home health agencies throughout the state. The home health agencies are the actual employers of the aides, LPN’s, and RN’s who go into homes to provide respite care. This department is supervised by the Community Outreach Director. The Recreation Department employs six recreation professionals and provides the Small Places Recreational Services as well as our camp sessions.

How are the home health organizations paid?

The families in the respite program receive a voucher each year and they can schedule with the home health agency of their choice. They are able to decide for themselves the amount of respite care they want and when they need it, so they can take a much-needed break.

Where does the voucher come from?

Most of them come from the Impaired Driver’s Trust Fund through the Alabama Head Injury Foundation, although, some of the vouchers are funded through United Way, private donations, and other sources. The vouchers are issued from the AHIF to the family and the primary caregiver. AHIF contracts with the home health agencies to provide the service and the family simply schedules it, as needed throughout the year.

This year, we started a new respite service in response to the needs of our families. It is called our Crisis Care Fund. We realize that a number of our families, in addition to needing a psychological and physical break from the 24-7 routine of primary care giving, also need to take care of their own health. Some of them needed surgeries they were putting off because they had no one to watch their loved one. We had others who were in accidents themselves or had an illness and could not care for their loved one. Their need for support exceeded the Respite Voucher. We were able to develop a program to support respite care when one of our clients/caretakers in the community support network had special needs due to an accident, illness, surgery or whatever. Within 24-hours we can respond. They simply have their physician contact us. A form is faxed stating that there is a need for emergency care and then we’ll contact the home health agency and have someone sent into the home. That gives peace of mind and also helps prevent institutionalization by helping the family plan for those unfortunate, but inevitable circumstances.

How are volunteers able to contribute?

In regard to volunteer support, we, of course, use volunteers throughout our programs; although, we would like to do a better job, if I might say, of actually recognizing and capturing the amount of volunteer effort. One of our Board of Directors’ goals this year is to improve our volunteer campaign so that we recruit, screen, train, retain, and recognize our volunteers in a greater way.

One example of how volunteers are utilized is helping with our housing program. We do have some financial assistance, usually to pay for basic construction or supplies and materials to help modify a home to make it accessible or structurally sound. Quite often the amount of money we are able to provide is leveraged by labor that is provided by volunteers. Here in Alabama we have been able to help over 50 individuals substantially modify their homes to improve accessibility and safety with the help of volunteers. There are groups already in the state such as Christmas in April, Carpenters for Christ, M-FUGE, and a number of other volunteer groups that also help with this type of housing need. Our Resource Coordinator taps into the volunteer pool and works with the client who ends up with a much-improved residential situation.

We have volunteers that work in our social/recreational programs, as well as our camp programs. We also have hundreds of volunteers that work with their local Resource Coordinators in a variety of ways. Whether helping deliver food to families or friendly visiting, there are a number of different opportunities for volunteer work. Individuals with brain injury are also volunteers; they provide some peer mentoring, as well as a number of other activities of that type.

Is there training for the volunteers?

Yes, there is. For example, prior to camp we’ll have a training session in brain injury for the volunteers. Typically they are college students going into the field of rehabilitation or special education.

How are the volunteers recruited and coordinated?

They are recruited and coordinated by the local Resource Coordinator. The first thing the Resource Coordinators do is start to network within their local community representing people with brain injury. They compile a large directory of local resources, which are not just financial aid resources; they are also volunteers, potential volunteers, churches that have volunteer groups that work as missions, and a number of other volunteer groups. We really look to the local Resource Coordinator to know how to tap into the volunteer pool depending upon the need of the individual client.

It’s very grassroots, then?

Yes, it is. We are getting back to what we all came from, without looking to a state entity or the federal government to provide all the help needed when one returns home after a brain injury. We are dependent upon the local community, the neighbors helping each other, the churches rising to the occasion. We find that once asked and informed they do a remarkable job in helping to provide the support to make community reintegration an actual true and viable option for people with severe disabilities due to brain injury.

You mentioned earlier that you currently serve approximately 1,400 people with brain injury.

This past year we served 1,492.

That is remarkable.

Some may be repeat clients from another year, but many are individuals who were recently injured. It continues to grow by about 10% each year. We have, in the state of Alabama, as a result of legislative efforts, a head and spinal cord registry, which, I understand, a lot of states have. One unique aspect of our registry is that it not only captures the epidemiological data on neurotrauma and brain and spinal cord injury, but it goes a step beyond and actually connects those individuals with a brain injury to the services that might be available for support such as the Alabama Head Injury Foundation and the Department of Rehabilitation Services. That registry, while it is still fairly new, should start to increase awareness of the community support program and other programs throughout the state that are being developed.

The 1996 TBI Act promoted identification efforts in many states. Was that the case in the development of Alabama’s registry?

Well, actually, we had tried prior to that to get the registry enacted. Many states have had one since the early 90’s. In the mid-90’s we introduced legislation for a brain injury registry, based upon an established cancer registry that was successful, but controversial in Alabama. There were a lot of confidentiality issues. It was something that had to be structured correctly to make sure the process had checks and balances. We were able to get that passed in 1997 after a two-year educational effort with the legislature, but it has taken five years to really get it fully up and implemented. We received a report just yesterday that it is running fairly well and people are starting to receive information upon discharge from the hospital on the types of services that are available. They no longer have to wander through the desert for years and years trying to figure out how to navigate the maze or make contact with people who might be there to help them.

How is the resource information distributed?

At this point, all hospitals in Alabama (not just trauma centers, but every hospital) reports to the State Department of Public Health every case of brain or spinal cord injury. Then Public Health forwards the information to the State Department of Rehabilitation Services who makes contact with the family, letting them know that the department received information about the injury. They give the family information on services that might be available to help them. There is a second follow-up contact made so individuals have the opportunity to connect themselves with us, with the State Department of Rehabilitation Services, or any other service that might be available.

Are there any costs to the clients?

The only cost we ever charge may be a moderate registration for camp programs which is always $50 or under for a weeklong camp session or $25 for a weekend session. It is not really used to fund the program, rather it covers costs of extras such as camp T-shirts. We also find that ‘pride of ownership’ is important. People like to help pay for some of those types of services. It helps to confirm the commitment too. If we reserve a space for a week at camp, we want to make sure that people show up.

What has been the most difficult aspect of developing the system?

Number one, the most difficult aspect has been trying to assemble continued funding for the program. Number two, would be trying to expand the program. For as good a job as we think we are doing, we are still not able to serve everyone that needs our services. We do have waiting lists for a variety of services such as housing programs and respite care and even to some extent local resource coordination.

Do you have any suggestions for how to overcome some of these obstacles?

It sometimes seems like we take two steps forward and one back. The more we do, the more we are needed. It’s kind of like chasing that elusive rainbow. The more we are able to get local communities involved, build awareness of brain injury, build awareness that, yes indeed, their neighbors have brain injuries and have needs--there lies the ultimate answer. Neighbor helping neighbor! That is how we have been able to expand our programs, by looking to the local community.

Do you have any recommendations for other states trying to develop a similar system?

One recommendation I would have is for them to contact the Brain Injury Association of America (BIA). A couple of years ago, NASHIA (the National Association of State Head Injury Administrators) conducted a series of seminars and produced a document describing something very similar to our Resource Coordination Program. It is called Resource Facilitation. I would suggest that all states get a copy of that document because it has some of the basics that one would consider when looking at and developing a similar project of
this type.

Where do you think are the biggest gaps in services to persons with brain injury?

I think the greatest gap is the lack of public awareness still. All other service gaps seem to be a result of that. Brain injury is, of course, the fastest growing disability in the country, yet one of the least served across the gamut in terms of research, local community services, etc. So, I think the lack of public awareness of TBI is our number one problem. Secondly, there is such diversity among the states in regard to Medicaid services. Some states have Medicaid waivers that are proving successful but very limited, some have no TBI waivers whatsoever, and some have opted to provide very few Medicaid funded services in their basic state Medicaid plan. That’s another area that could really provide substantial support for people returning home after discharge from the hospital.

How do you plan to increase public awareness?

We are pulling together a public relations committee in Alabama and we’ll be developing a strategic plan to address that and also to capture what public awareness we are currently doing in order to get a baseline. We’ll know from that point whether we’re being successful or not.

Do you have any ideas on how to increase the number of volunteers?

We have a position within our organization called the Director of Community Outreach. Among some other supervisory responsibilities, this person is going to coordinate the volunteer campaign. We are going to develop a volunteer campaign to address recruitment, screening, training, retention and recognition. We plan to adopt the campaign throughout the state so we can further encourage members of the local communities to become involved in the lives of our clients with TBI.

I noticed that you have developed the socialization/recreation program in seven cities in Alabama. Did you start the programs one at a time or all at once?

We have eight now! Actually we started one as a pilot project in the Birmingham area funded by a variety of sources such as United Way, private donations, and foundations such as the Alabama Power Foundation. It was developed under the leadership of a Ph.D. who was very knowledgeable in TBI. She pulled together a group of consumers with TBI, as well as family members, and we started to brainstorm what types of social/recreational services we would like to develop. From that session of town meetings, if you will, we put together a plan that would provide an age-appropriate social/recreation option called Small Places--“great things happen in small places.” It was developed to be membership-driven, meaning that the members decide what activities would take place in the upcoming months, develop their own schedule for activities, and pretty much drive the program. Now we do have facilitators who are recreational therapists who help. They quite often come up with some great ideas and suggestions that may serve as prompts, if you will, but it is the members that really drive the program. As I said earlier, we started in Birmingham in 1997; that program is a five-day per week program. We were then able to replicate it in the Anniston area with the help of the Calhoun County Community Foundation a year later. From there we started to develop small part-time programs throughout the rest of the state. Some may meet only once every other week, some meet one day a week, some twice a week; it all depends on the level of funding that we are able to generate in the local communities.

Can you provide more information on the Housing Program?

In addition to the Housing Modification program that we have been conducting for quite a number of years, we realized there was a need to further develop an array of options for people with brain injury. So in 1998 we contacted Accessible Space Incorporated (ASI) out of St. Paul, Minnesota. ASI, as they are called, is this country’s largest developer of accessible housing for people with disabilities. They are pretty adept at developing grants that HUD (Housing and Urban Development) will fund. So we were able to contract with them and raise some money privately to encourage them to develop an application to submit to HUD for a supported living complex here in the state of Alabama. We were very successful. The application was funded by HUD and funds were reserved for that project which was to be in the Birmingham area. In response to consumer demand and raising local funds in northwest Alabama (the Shoals area, as we call it), we followed up the very next year with another application for a supported living complex. By sending information to our mailing list of individuals with brain injury as well as spinal cord injury and other disabilities that we serve throughout the state, we let it be known that the project, Dogwood Terrace, was underway and would provide 20 subsidized, affordable and accessible, barrier-free apartments in Florence, Alabama for people with brain injury and other physical disabilities. Ironically, because of zoning, site development, identification and some other issues, the latter project in the Shoals area (Florence, Alabama) is actually proceeding more quickly than the one in the Birmingham area. In fact, this week we have received a Certificate of Occupancy and people are now starting to move in; they will be in by the time this article is printed. There is a waiting list already. We are not in charge of that waiting list. Successful Space is handling the management of the complex for us.

What exactly does HUD cover in terms of costs?

HUD does provide the majority of the construction cost but not all. We were also successful in securing substantial funding from the Federal Home Loan Bank of Atlanta, as well as some state monies and some private donations. It’s sort of like a seven-layer salad, layering the funding to get a quality project. The individuals who will reside in the complex will pay 30% of their income, whatever that is, for rent. HUD will subsidize the vast majority of the rent under a 40-year agreement. So if you have a fair market rent in that area of $400; the resident pays 30% of their income, say, for example, $100, then the federal government will pay the balance of $300 a month in rent. That helps to maintain and operate the facility.

Have you seen any evidence of your programs having alleviated cost/resources from overloaded public service providers?

Alleviating the costs of institutionalization is the first thing that comes to mind. I consider our Resource Coordination, Social/Recreation, and Respite Care programs as prevention of institutionalization, which in this state exceeds $45,000 per person served annually. So allocating the small amount of funding that it takes to help an individual thrive in their home and community is, I think, a good cost-effective way of providing support to that population and it also helps the population at large. Our partner is the Department of Rehabilitation Services. Their pre-vocational program, the Interactive Community Based Model (ICBM), has proven successful in helping individuals who historically would not have returned to work. And of course, there are the obvious financial benefits of the individual returning to work, becoming a taxpayer, and putting money into the economy, all of which helps the state, as well. One important goal is being cost effective. As I mentioned, the local resources generated ($491,000 this year) is leveraged as well and that makes it an extremely cost effective program, if not one that you could technically consider pays for itself.

Premier Outlook would like to thank Mr. Priest for graciously giving his time to
provide this valuable information about resource development. It is our hope that this information will be used to develop similar resource networks in states across the country.

Developing a Network of Community Supports

The Alabama Head Injury Foundation (AHIF) has as its mission to “improve the quality of life for people surviving traumatic brain injury and for their families.” To accomplish this, AHIF has spent the last twenty years advocating for and stimulating the development of services and supports for its constituency. As the primary consumer advocacy organization, AHIF spearheaded the passage of the Alabama Impaired Drivers Trust Fund, the Alabama Head and Spinal Cord Injury Registry, and numerous other legislative acts. Other systems change activities have resulted in enhanced educational services for students with TBI, improved community reintegration opportunities and increased family support. AHIF often works collaboratively with other entities, such as the Alabama Department of Rehabilitation Services (ADRS), resulting in public/private partnerships which have proven extremely effective and is now a nationally recognized model of service delivery.

To help fill the gaps and provide for unmet service needs, AHIF has developed the following array of support services:

• Information & Referral: The state’s largest repository of information on brain injury geared specifically for consumers and family members. This service may be accessed by email (ahif1@bellsouth.net), telephone (1-800-433-8002), or general correspondence. A knowledgeable professional will research the questions/requests for information and respond within 24 hours, often immediately. Over 800 calls are received annually resulting in 1,000 referrals; 1,250 bits of information disseminated.

• Support Groups: For emotional support, over 30 groups hosted by or affiliated with AHIF are available statewide. Whether the group is therapeutic in nature, informational, social-recreational, or a combination, support groups were the very first service offered by AHIF and continue to meet many individual and family members needs.

• Resource Coordination: Highly trained and caring professionals – most of whom are consumers or family members – are based across Alabama and serve over 1,200 people each year in all 67 counties. Resource Coordinators provide local help through information/referral, emotional support, educa- tion and resource development. These professionals have become so proficient at helping their clients that over $500,000 worth of donated or discounted goods and services are secured each year by the Resource Coordinators. Food, medicines, shelter and related needs are met through the compassion and generosity of local communities. Resource Coordinators also assist clients in “navigating the maze” of federal, state and local assistance programs.

• Respite Care: Studies have shown that many families providing round-the-clock care for a loved one who is severely disabled from a catastrophic injury often go up to seven years without a substantial break. This is a recipe for disaster. AHIF’s Respite Care Program provides over 75 caregivers with a psychological and physical break from the demands of this level of care. Through contracts with home healthcare agencies, AHIF clients may select the service and the dates of respite care needed. Emergency care is also available on a limited basis in the event the caregiver becomes ill, providing
peace of mind.

• Socialization/Recreation: The Recreation Department of AHIF provides many social/recreational opportunities including Small Places – a day recreational program now offered in Birmingham, Tuscaloosa, Calhoun County, Florence, Huntsville, Cullman and Mobile. Designed and supervised by recreational therapists, this service enables survivors the opportunity to participate in stimulating activities in an age appropriate, supportive environment.

Camp programs are also held throughout the year with a Spring Camp Weekend and a weeklong summer camp held at Camp ASCCA in Jackson’s Gap, Alabama and teen camps held in the winter at the new Lakeshore Facility. Over 200 people are served by the Recreation Programs annually. There is a modest fee charged for attending AHIF Recreational Programs.

• Housing Programs: Accessibility modifications and structural repairs to survivors’ homes often mean the difference between maintaining residence in the community or institutionalization. AHIF provides such renovations, often with local volunteer support, at no charge to the client.

Dogwood Terrace, a 20 unit apartment complex located in Florence, Alabama, is a collaborative project between AHIF, Accessible Space, Inc., the U. S. Department of HUD, the Federal Home Loan Bank of Atlanta, the city of Florence and many other individuals and groups. The one and two bedroom apartments are barrier-free in design and affordable as a result of rental subsidies. Dogwood Terrace is scheduled to open in the winter of 2003.

A similar project, Rocky Ridge Place, is under development in Hoover, Alabama.

The Future: AHIF plans to continue to provide and hopefully expand these critical community-based services. New initiatives will include increasing the public’s awareness of the Foundation and of traumatic brain injury and increasing the number of volunteers involved in helping the Foundation help others.

For more information, please contact AHIF at 1-800-433-8002 or visit the website at www.ahif.org.

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