Competition Regarding Best CIL Practices in Rural Outreach to Emerging Disability Populations

PROGRAM SUMMARY

The mission of ASSIST! to Independence is to provide culturally relevant services to a cross disability American Indian consumer population. Each of our programs emphasize a common goal of enhancing quality of life and community access through maximizing independence and improving functional skills.

PROGRAM DESCRIPTION

ASSIST! to Independence is a Native American owned and operated non-profit organization located on the western edge of the Navajo Reservation, in Tuba City, Arizona. Services are provided to individuals with disabilities or chronic health conditions across the life span residing on or near the Navajo, Hopi and Southern Paiute Reservations. All program activities are directed by a consumer driven Board of Directors representing communities across the Navajo and Hopi Reservations. Programs include the Center for Independent Living; Assistive Technology Resource Center; Functional Assessment Clinic; Sensory Integration Project; and the Special Needs Toy Lending Library.

The Center for Independent Living began operation in December of 1998 with a three year grant from the Navajo Nation Trust Fund on Handi-cappable Services ($450,000). In October of 2000 we were awarded Title VII, Part C funds of approximately $33,000, which increased to approximately $101,000 in 2001. Staff for the CIL include an Executive Director, Coordinator for IL Services, and an Administrative Assistant. Rehab Technology Services are provided on a contractual basis.

ASSIST! was created by community members with disabilities who recognized the need for more flexibility in service delivery systems. All services are planned and provided using independent living philosophy and principles:

Consumer control at the policy level of Center’s operations:
Our Board of Directors is comprised of seven individuals; five are individuals with significant disabilities, and two are parents of individuals with significant disabilities.

Majority representation of persons with disabilities at the administrative and staff level.
Two of the three CIL staff are individuals with significant disabilities.

Emphasis on services to a cross-disability consumer population.
Since opening our doors in 1998, we have provided services to the following numbers of individuals with varying disabilities:

Cognitive: 517
Hearing: 75
Psychological/Behavioral: 70
Physical: 1868
Speech/Language: 545
Visual: 161
Other: 22
Unknown: 283

Emphasis on consumer control of service objectives and on peer role modeling.
All consumers who receive services through the CIL are given a satisfaction survey which gives them an opportunity to discuss how services could be improved, added, deleted or changed to better serve their needs. All staff and Board members serve as peer mentors for others in the community.

Provision of four core services.
Since 1998 we have provided the four core services to approximately:

Advocacy: 352 people
Peer Mentoring: 139 people
Skills Training: 1026 people
I & R: 1412 people

Additionally, we have provided services through the Rehab Technology Program which include: home modifications, transportation, attendant care, assessment/evaluation, assistive technology demonstration/loan.

ASSIST! has been in a unique position to provide services to individuals from emerging disability populations since our program began in 1998. This is due in part to our location, program focus, collaborative partnerships and our culture. American Indians in general have a greater incidence of disability, estimated at 26%, with the prevalence of Diabetes at more than twice that of the total population. Diabetes was detected in 17.2% of Navajos aged 20 to 74 years in a regional 1989 to 1990 study, 2.5 times the rate of the general US population. Arthritis was the second most common self-reported chronic condition among American Indians, and reported as a cause of activity limitation. In our Native language there is no word for disability. People are described by their characteristics - slow to learn, walks with a limp, etc. Consequently, people will not seek out services that are specifically targeted toward “people with disabilities”, because most do not self-identify as being disabled. “I remember a woman from one of the disability organizations complaining about the fact that the literature on disability failed to take gender into consideration. Yet, she could not understand where I was coming from on the Indian issues. They simply can’t understand that I am an Indian first, then I am a woman, and then I am disabled. That is what makes the Indian perspective different”.

A large majority of the people we serve have “emerging” disabilities: diabetes, degenerative joint disease, rheumatoid arthritis, renal failure, asthma, low-vision, cardio-pulmonary disease, osteoporosis, amputation, cancer and many aging related functional limitations. We feel we have been successful in providing outreach and services because we understand the cultural concept of “wellness”. In our cultural belief, health, emotional or physical problems are caused by being out of harmony or balance with nature - our spirit. Our spirituality cannot be separated from physical life, because life is considered to be holistic; one part of life cannot be separated from the whole, or the whole will suffer. When a person is experiencing ill health, emotional or physical problems, it is because the spirit is out of balance with the forces of life. Harmony can be put back in balance by an active effort, such as performing a ceremony, or any conscious activity to correct an imbalance. We believe in a spiritual life before and after our earth life. Our spirits come to earth life to learn or experience things that our spirit needs to understand. In doing so, a spirit chooses to accept the difficulties of life, including “disabilities”, in order to gain something in the spirit life. We believe that disharmony can come from three major life areas: (1) the breaking of taboos, (2) from the forces of nature, (3) from the manipulation of negative energy. Because we understand cultural beliefs, we are able to offer services that are culturally appropriate, such as traditional healing ceremonies.

Our outreach efforts are targeted to individuals who have aging related functional limitations and chronic health conditions. We participate in many community health fairs which are sponsored by area Chapters, as well as active participation in programs sponsored by Senior Centers. In addition, we have developed collaborative relationships with Community Health Resources, public health nurses, and clinical staff at most of the public health clinics. We also collaborate with the Family Wellness Center, which has a large fitness center created specifically for individuals with diabetes, and we refer people back and forth to each other depending on their needs. We also work closely with the coordinator of the Diabetes Clinic, and have gone on home visits with her to provide outreach services.

During the past fiscal year, services were provided to the following number of individuals diagnosed with “emerging disabilities”:

Asthma 4
Arthritis 34
Cancer 4
Congestive Heart Failure 7
Degenerative Joint Disease 13
Diabetes 46
Degenerative Disease (Navajo Neuropathy) 4
HIV 1
Hypertension 22
Hypothyroidism 6
Osteoporosis 6
Parkinsons Disease 6
Stroke 8
Tuberculosis 2

As a result of their disease or chronic condition, each of these individuals has experienced a significant decrease in function which limits their independence. However, only 15% sought out independent living services on their own. The remaining 85% were referrals received as a result of our collaborative efforts with the community health representatives and public health nurses.

One of our programs, the Functional Assessment Clinic, was created out of a need we discovered over a period of several years in trying to provide and coordinate services to this population of people. Having a team of qualified professionals together to discuss with the individual and family their spiritual, emotional, mental and physical needs and issues, has proven to be a great facilitator of more comprehensive and coordinated services toward “wellness”, which are self-directed by the individual. The Clinic is designed to take a holistic approach at evaluating an individuals needs and current functional abilities. The Functional Assessment Clinic is a unique collaborative effort between (1) ASSIST!, which provides the space, equipment, and Rehabilitation Engineering services, (2) Tuba City Indian Medical Center (PHS), which provides the therapists - occupational, physical and speech/language - and physicians, and (3) the Arizona Community Foundation, which provided the initial funding for the purchase of equipment.

Because of the huge geographic and transportation barriers faced by most people living on the Reservation, we have had to adapt our program services to accommodate the needs of the people we are serving. This means that a lot of time is devoted to home visits, which is our most effective means of outreach. The CHR’s and PHN’s, who routinely visit many of the individuals who have chronic health conditions, will send a referral for someone they feel would benefit from our IL services. This means we spend a lot of time traveling long distances, but it is the only way we are able to reach people with these conditions; primarily because the majority of people we serve do not have transportation or a telephone. Fortunately, we were able to purchase an accessible vehicle, for both transportation and home visits, with some of the initial funding we received early on from the Navajo Nation.

Chronic care management is difficult because of the episodic nature of the diseases and the multitude of services required. The Executive Summary of Long Term Care Services in Arizona (St. Lukes Charitable Trust, 1998) states that there is no central point of coordination or responsibility at the state level for individuals with disabilities. It further states that the separation of populations based on service systems does not facilitate sharing of provider resources or the coordination and linkage of services at the case management or community level. Collaboration and open dialog with other providers in our community, such as public health, social services, senior centers, etc., has been critical to our ability to successfully outreach and deliver services in a timely manner. We have developed Memorandums of Agreement with Tuba City Indian Medical Center (PHS), the Navajo Nation Office of Special Education and Rehabilitation Services, the Arizona Commission for the Deaf and Hard of Hearing, to name a few, to facilitate better service delivery.

Currently, our federal budget for the Center for Independent Living is approximately $101,000. Our fee for service program currently generates approximately $40,000 per year and is distributed across programs based on current need. Approximately 70% of our total budget is devoted to direct consumer services. Our travel budget is pretty large because so much of our work is done out in the field, and we travel over the entire Hopi, Southern Paiute, and Navajo Reservations, which includes parts of Utah and New Mexico. Approximately 65% of the budget is devoted to direct services for individuals with disabilities or chronic health conditions.

In short, we feel we have been successful for the following reasons:

1. Services are dynamic and fluid in nature, so we are able to respond fairly quickly to current needs within the community.
2. Understanding and immersion in the culture we are serving, and respecting differing cultural needs.
3. Aggressive outreach promoting “wellness” services, as opposed to services targeted primarily for people with disabilities.
4. Extensive and comprehensive collaborations and networking within the community.
5. Close working relationships with “non-traditional disability specialists”, such as community health representatives, senior centers, and public health nurses.
6. Visible presence within the community. We attend many senior functions and all health fairs promoted by Chapter Houses within communities across the Reservation.

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