Some recent efforts by states to provide access to services that specifically support aging and older people and their care givers are using a systems change approached first initiated by the New York Office on Mental Retardation/Developmental Disabilities (OMRDD) and the State Office for Aging (SOFA) service systems (Janicki & LePore, 1990). Other states are simply meeting both the aging and disabilities systems head on to educate and create awareness of what and how each system provides services and supports (Center on Aging, University of Maryland 1990). The earliest efforts to access services from the two systems (aging and mental retardation/developmental disabilities) were started in New York focusing on four counties. A second statewide effort began in Maryland where the approach was on staff of aging and mental retardation/developmental disabilities services worked in the opposite agencies for a brief time. Along with these different approaches being used by states, other notable progress has been made during the past ten years-all attempting to address people who are confronting aging and disability issues simultaneously in their lives. Approximately 25% of the University Affiliated Programs developed aging training initiatives funded by the Administration on Developmental Disabilities during the past ten years. Changes in the Older Americans Act and the Developmental Disabilities Act and Bill of Rights have been amended to include specific language on disabilities and aging-- producing memorandums of understanding between the Administration on Aging and the Administration on Developmental Disabilities (1987). Additionally, the National Institute on Disability Rehabilitation and Research has funded an Aging and Developmental Disabilities Research and Rehabilitation Training Center since 1988.
Growing concerns about its own increasing numbers of persons who are aging with disabilities or caring for persons with disabilities has prompted Texas to join this quest for progress. In 1996, the Texas Department on Aging (TDoA) submitted a proposal to the Texas Planning Council for Developmental Disabilities for a five year project to develop and implement supports and services to aging and older Texans with developmental disabilities and their families. The primary goal, TDoA proposed, was to develop local collaborative systems and supports that will directly impact persons with developmental disabilities who are aging and whose care givers are aging. Simply put, the Department wanted to change the underlying system, so that all across the state, these persons can easily find and get any aging and disabilities services available to them in their communities.
The Planning Council awarded TDoA $1,057,951 over a five year period which began in October 1996 and will end May 31, 2001. TDoA committed an additional $600,000 of its own funds to the project to assure adequate funding and continuation of supports and services across the state.
The Department's first activity under this new grant was to invite participation in a statewide consulting committee. The members of this committee were asked to bring their expertise and experience, not only in the areas of aging and developmental disabilities, but in other areas critical to a well-balanced approach for the project. This was to include such areas as self-advocacy skills, insurance matters, financial & estate planning, life planning, legal issues, etc. Another purpose of the committee was to connect the project with people and places in the know: advocacy agencies, academia, local model programs and any others interested in serving and supporting this population. The agencies represented on this consulting committee include:
The area agencies serve locally as the lead agency to develop collaborative and cooperative interagency efforts among established community agencies and programs. Together, this local interagency "workgroup" will set out the necessary steps and activities to develop individualized plans that can be used by multiple agencies to personally assist aging persons with disabilities or aging caregivers residing in their areas. These individualized plans will ideally offer options and guidance for persons in either group (aging with disabilities, or aging caregivers) in making appropriate choices in their later life years. Such options and choices include questions like:
The Tasks of TDoA
In addition to setting up the project consultation committee and funding seven local projects, the Department planned to:
The Expectations at the Local Level
TDoA planned to fund up to seven area agencies each year for four years. Each AAA was to receive $37,500 over a two year period; $18,750 for the first year and $18,750 for a second year of activities. Funding for the third year and beyond will be the responsibility of each local project and AAAs are instructed in the initial proposal to address their commitment to this. By the fourth year, the Department expected all or nearly all of its twenty-eight area agencies to be participating in the project.
As they pave the way for the rest of the state to integrate services for older Texans with disabilities and/or their caregivers, the first year for each of the AAAs, starting out in 1997, will likely need the greatest levels of technical assistance and information sharing among the local agencies. To facilitate such a critical foundation, the first year focus for the AAAs will be simple and to the point:
Year One Activities at the Local Level
There are four basic objectives to be accomplished in the first year at the local community level:
Year Two and Beyond Activities
The objectives of the AAAs and the work group members in the second year and beyond move to providing supports and access to services for the target populations.
A Brief Overview of State Efforts in Aging/DD Services
The first recognition of an aging population with developmental disabilities existing in the country was in the early 1980's. The reauthorization of the Older Americans Act of 1987 and the Developmental Disabilities Act and Bill of Rights of 1987 placed requirements on the state agencies responsible for aging services and developmental disabilities services to seek to serve the aging and older populations who qualified under the definition of severe disabilities. The Secretaries of the Administration on Aging and the Administration on Developmental Disabilities encouraged state agency participation in cooperative efforts between aging and developmental disabilities by signing memorandums of understanding for collaboration and cooperation to serve this targeted group across the country. However, as late as 1993, less than 1/3 of all the states (15) had developed a memorandum of understanding between these two state agencies. The memorandum called for the review of each agency's annual plan by both to see what services and programs would be available to the population with developmental disabilities who are aging. The Developmental Disabilities Councils were to provide for a representative member of aging services to be a member of the Council.
No state before Texas has made an equal commitment to provide access to services and support options by aging and older citizens with developmental disabilities or their aging and older care givers on a statewide basis. The focus on a collaborative and cooperative project under the leadership of each Area Agency on Aging in developing access across the state has not been attempted previously and provides a unique and different concept to serving the needs of the target population. Previous efforts indicate the states lacked a full commitment or adequate and on-going financial support to initiate and continue options and choices in the later life years for the population with developmental disabilities.
New York
The early leader in getting aging services and developmental disability services to initiate collaborative efforts for the benefit of aging and older people with developmental disabilities was the state of New York. A project was started where four counties (two rural and two urban) were funded to examine the needs of the target population, the availability of services, and to focus on educating the dd service staff on how to access aging services. The project experience provided the information and materials for developing handbooks on the techniques used to initiate and operate the projects during the funding period. Today, a decade later, the state has not developed these models throughout all the counties and Area Agencies on Aging. Matthew Janicki and Philip LePore were the project leaders in New York.
Maryland
Maryland took a different approach to networking between the aging and dd service agencies there. The effort focused on education and awareness of staff members of each system by having representatives to work in the other agency for two or three days to gain a perspective of what was going on and the resources available for serving the aging and older population. Local people were recruited as aging/dd specialists to assist in opening the service systems of both agencies to the target population. The project was named "Partners". Edward Ansello and Iris Gordon were the key people to coordinate and move the project forward. Ansello has since taken a position at the Virginia Commonwealth University (VCU) Center on Aging and has revised and setup a Partners program there.
Ohio
Under the leadership of Ruth Roberts and her staff at the University of Akron, a project was funded by the Kennedy Foundation to promote the use of senior volunteers as mentors for aging and older people with developmental disabilities in the Akron area. The focus of activities was to recruit and train senior citizens without disabilities to become friends and mentors. The project was called "Friends", and the efforts were successful in getting limited numbers of aging people with dd involved in community activities for a few hours each week accompanied by a companion. The project covered mileage expenses, insurance for the volunteers, and small stipends if necessary. The project was for a limited time of five years and then carried on in a few settings after that. However, it set the stage for the collaboration of a multi-site University research project (seven in six states) to create the first Rehabilitation Research and Training Center on Aging and Developmental Disabilities funded by the National Institute on Disabilities and Rehabilitation Research beginning in 1988 and in the second phase of five years funding cycles today.
Illinois
The state of Illinois has funded efforts to move people with developmental disabilities from inappropriate residential placements in skilled nursing homes to community residences including aging and older individuals. Alan Factor and Tamar Heller were instrumental in assisting the planning and assessments of needs. Both are faculty members at the Institute for Human Development at the University of Illinois at Chicago and have been involved in a longitudinal study of 300 older families caring for adults with dd since the mid 1980's. The RRTC on Aging and DD has been managed from there since 1994.
Kentucky
The state of Kentucky has funded model-aging projects in rural areas that focused on person centered planning and accessing the available and current resources of the local communities. These models are still operating and providing individualized options and supports in four of eight sites. The DD Council funded two series of demonstration projects in 1988-91 and 1992-94. A statewide needs assessment was conducted in 1993-94 where more than 200 aging and older people with disabilities and their aging caregivers had the opportunity to voice their needs and concerns in 18 public forums across the state and more than 800 agencies and staff members were involved in eduction and awareness training of the impact on aging and dd and the needs of this target population. Jim Stone was the person who directed these activities.
Florida
The state of Florida conducted joint planning sessions among the aging and developmental disabilities service agencies for a two year period; however, the leadership in the state moved around to other positions and responsibilities and direct services have not been established that provide any specific opportunities to aging people with dd or their aging and older family members. Matt Janicki and Ed Ansello were invited presenters and facilitators for these planning sessions. Tony Chapman was the advocate for these changes but has since taken a position as Director of the Florida Alliance for the Mentally Ill.
Colorado
In 1990-91 Colorado conducted an effort to fund specific aging support services for their population growing older and ready for retirement type activities. State funds were allocated to provide attend the Lexington Conference on Aging and DD in 1991 and to bring back information that would be adaptive to the state systems. Agencies have developed options and supports at the community level as they saw the needs.
Mississippi
Under the leadership of Paul Cotton, Mississippi has sponsored an annual state conference between aging and mr/dd services for more than a decade. Older people have moved from institutional environments to small group homes accessing senior centers or what activities are available with the focus of retirement being to something not just from something.
Does Aging Affect People with Developmental Disabilities?
The Aging Texans with Developmental Disabilities Projects are being developed to provide an awareness for understanding the growing problem of aging with a developmental disability, the responsibility of caregiving for decades, and the newest concern of grandparents who are now responsible for grandchildren who have developmental disabilities. As an AAA project, it is important to understand the current way communities respond to the needs of individuals with developmental disabilities and family members. There are 12 Area Agencies on Aging (AAA) that are leading community agencies in exploring options and choices directed to helping these individuals and families to respond to crisis situations and everyday situations where it is time to offer new supports and new things to do to the aging and older population in Texas with developmental disabilities. But first, it is advantageous to begin to learn about developmental disabilities and the impact of aging on people with developmental disabilities.
The first question to answer is what is a developmental disability?
The Developmental Disabilities Assistance and Bill of Rights Act of 1994 (Public Law 103-230), defines a developmental disability as:
The major categories include: mental retardation, cerebral palsy, autism, severe seizure disorders, and neurological impairments. Only in the past 20 years or so has this aging and older "invisible population" (living at home with aging and older relatives and family members without accessing any community supports or services) become known to service systems and service providers. Aging in place is what this has been called. Parents have been continuing the care giving responsibilities for up to fifty years and beyond.
The next question to answer is what is aging?
Aging has been defined as the erosion of an individual's functional reserve with the passage of time (Wisniewski & Merz, 1985). This erosion may be influenced by: (1) genetics; (2) environment; (3) personal health conditions; and (4) life style. Depending on the professional viewpoint, aging may occur (1) at birth and continue to death; (2) occur at the onset of a major illness; or (3) begin to be noticeable somewhere in the third decade of life and continue life long. For people with developmental disabilities, these same four variables affect the aging processes. There are exceptions that include people with Down syndrome, cerebral palsy, and with severe impairments. These individuals may experience erosion of functional reserve prematurely.
Most of the hands-on service providers working with persons with developmental disabilities have little understanding of the aging processes, the impact on the individual, or when these changes might begin to take place. The University of Missouri at Kansas City Institute for Human Development has reproduced an easy primer on the physical changes as individuals with developmental disabilities experience the aging processes. That information is adapted here; however, it is important to remember that each person ages individually. The following information is just an overview. It is not generalized to everyone who lives to a certain age. These aging changes highlighted include affects on: hearing, vision, musculoskeletal, cardiovascular, gastrointestinal, and the central nervous system.
Hearing
Hearing losses usually occur as one grows older. Usually 30% of the people between the ages of 65 to 74 suffer some degree of hearing impairment. This percentage increases to 1 in 2 after the age of 75. High sounds, some consonant sounds (especially "Z", "Q","S", & "T'), and tinnitus (ringing in the ear) are the more frequent problems. People with Down syndrome may have more frequent hearing loss than the general public. Many have acquired hearing loss in their childhood as a result of middle ear infections. Even as early as their twenties, individuals with Down syndrome are subject to hearing losses experienced by the general elderly population. An annual hearing exam should be provided as individuals grow older.
Vision
Some of the physical changes that may occur include difficulty with seeing colors at the low end of the color spectrum, especially blues and purples. "Floaters" or tiny spots or specks may appear in the vision field. Dry eyes or excessive tearing may be present, farsightedness gradually affects people over the age of 40. Some of the more common eye diseases include:
Musculoskeletal
Many changes in the bones of the body occur after the age of 40. Women experience changes in bone loss, there is a decrease in the fluid between the joints and the disks of the spine. By sixty five, hardly anyone has not experienced some type of joint disease, especially arthritis. Loss of potassium and deterioration of the muscles make physical labor an arduous task. Diseases prevalent in the later life years include:
Persons with developmental disabilities especially those with cerebral palsy may experience reduced mobility at an earlier age than the general population. People with Down syndrome may have decreased muscle tone, curvature of the spine, lax ligaments, and hip problems. Up to 90% of individuals with Down syndrome have bunions that may cause balance and walking difficulties.
Gastrointestinal
As one ages, the sense of taste and smell decreases. Aging individuals may experience problems with swallowing caused by either a decrease in the production of saliva or thickening of the lining of the esophagus. Diminished gastric juices may cause indigestion or ulcers. Medications may bring on constipation, which can aggravate diverticulosis pouches in the intestines. Hemorrhoids are common in older persons and should be brought to the attention of a physician if rectal bleeding occurs. The loss of teeth due to common dental practices in the 1930s and 1940s may create digestive problems in the later life years.
People with Cerebral Palsy may have experienced life long eating problems which may become worse with the age related esophageal changes.
Cardiovascular
The heart is one organ of the body that does not regenerate new cells when the old ones are damaged or die. As one ages, diseases of the cardiovascular system may become prevalent. Hypertension may affect the heart or cause strokes, fat buildup in the blood vessels may cause hardening of the vessels restricting the flow of blood to the heart, lungs, brain, and other organs. Forty percent of the people with Down syndrome have congenital heart disease. These individuals may also develop heart murmurs that were not present at birth.
Central Nervous System
As one ages, the brain starts to decrease in size due to atrophy, loss of neurons, and decreased blood flow. Plaques form producing a slowing of the information transfer between the brain and the nerve endings throughout the body. There is a general slowing of reaction time and physical movements of the body. Sleep patterns are changed as one grows older with more interruptions and more periods of awakening during the night.
Additional Health Issues for People with Down Syndrome
Marilyn Adlin, Institute on Aging and Adult Life at the University of Wisconsin, Madison, shares some aging and health facts on individuals with Down syndrome. "in 1929 life expectancy for a person born with Down syndrome was 9 years, increasing to 18.3 years by 1961, and today the life expectancy is 55 years."(pg. 20 IMPACT) While individuals are now living longer, they also experience changes related with aging prematurely. Awareness of these circumstances by family members and service providers may aid in reducing the onset of more disability and preserve optimal functioning. Hawkins and Eklund (1992) have reported in their longevity studies where men lose their skills earlier than women and men die before women.
Alzheimer's Disease
Approximately 4 in 10 individuals with Down syndrome exhibit dementia of the Alzheimer's type (Dalton, 1991, Adlin, 1993). Changes in the brain associated with Alzheimer's is present in all persons with Down syndrome by the age of 40. The duration of Alzheimer's in individuals with Down syndrome is 3.5 to 10.5 years from diagnosis to death. Early symptoms include loss of memory, getting lost in familiar surroundings, and decreased verbal expression. Later stages may consist of apathy, inattention, decreased social interaction, daytime sleepiness, gait deterioration, muscle spasms and seizures. However, not all these symptoms may be a result of Alzheimer's. Sleep apnea, sensory losses, other diseases, and discomforts may cause some of these same problems. Other causes that are not Alzheimer's include: (1) depression, (2) adjustment to changes, and (3) limited capacity to express emotions attributed to a lack of education and may also contribute to behavioral changes and functional declines.
Sleep Apnea
Children and adults with Down syndrome have been observed having sleep apnea. Symptoms may include: excessive daytime sleeping, failure to thrive, behavioral disturbances, declining functional skills, and disrupted sleep patterns. Predisposure factors among individuals with Down syndrome may include: an abnormally small upper airway, obesity, increased secretions, tongue weakness, decreased muscle tone causing a collapse of the airway, and enlarged tonsils and adenoids due to frequent infections. Because of these factors, it is reasonable to expect an increase in the prevalence of sleep apnea as individuals with Down syndrome age. This has been found to be true in the general population-an association between increased sleep apnea with increased aging.
Thyroid Disease
Twenty to thirty percent of people with Down syndrome have hypothyroidism. The symptoms include: confusion, functional decline, constipation, lethargy, depression, fatigue, and dry skin and hair. If not treated, this may cause hallucinations and coma.
This brief overview of these specific aging processes and the impact on the population with developmental disabilities may have encouraged the reader to seek more in-depth information. Inquiries may be made to the Supports for Aging with Developmental Disabilities Project at the Texas Department on Aging. Please review the video tape: When People with Developmental Disabilities Age for additional information on aging and the impact on people with developmental disabilities. There are not major differences between the impacts of aging on people with developmental disabilities and their age peers without developmental disabilities other than what has been discussed above. Life expectancy may depend more on genetics and lifestyle than disabilities. People with mental retardation may live to be 80, 90 or in some cases over 100 years.
After the first 21 months of the Project, the first assessments of current and future needs indicates the similar needs expressed by others across the country. Older individuals have expressed their needs for "something to do" activities and housing. Family caregivers have vocalized their needs:
Local community agencies that are participating in projects are looking at their needs for training and education in many different areas to be able to assist these aging individuals and older caregivers and to work together with other agencies in their area. New Projects may seek the assistance of local colleges and universities or other agencies that are skilled in developing information or need assessments. These assessments may use a combination of information collecting techniques including: mailed or phone surveys; public meetings or focus groups; and having agency staff work with clients and caregivers to gain a view of what resources are available and being used, what is available not being used, and what additional supports may be necessary in the future. Assessments may also be focused on barriers that may need to be overcome to provide access or supports. It is important to understand that questions should lead to gathering useful information, for example: asking a person "what do you like about the services you are now receiving?" may get a different response than the question "what services are the most helpful to you now?". Your local community environment may require a specific focus that has not been followed previously. There are a number of ways to conduct outreach and to do need assessments. These may include:
The South East AAA has the experience of Beaumont State Center, a local community dd agency, that mailed 40,000 informational pamphlets in the water bills and received 500 phone calls about their services. The Panhandle AAA, in the fall of 1998, used a monthly magazine from the Texas Rural Electric Cooperative and reached into 60,000 rural homes in their service area with an informational mailer on the aging/dd project. Information requests that provided information on 12 older residents were returned. This indicated that people were reading the magazine so dissemination of information could be enhanced using this medium but the outreach/referral response was not "over-whelming"! Estimates of approximately 10% of the target population living in the region returned the mailer, the remaining 90% did not.
Other efforts to conduct need assessments have been done in some states, some regions, and a few communities. Researchers in the past ten years have reported approximately four in ten aging and older individuals are known to any formal service system. A statewide assessment in Kentucky in 1993 revealed, the Department of Mental Retardation was serving 403 people who were sixty and older but other provider agencies were caring for an additional 3900 people. These agencies included the Department of Medicare/Medicaid, the Office of Vocational Rehabilitation, and the Department of Social Services. In the fall of 1998, the Texas Department on Mental Health and Mental Retardation (TMHMR) shared their numbers of current clients who are fifty and older and may need assistance in the future as 10,000. Conclusions may be drawn here that would indicate between 25,000 and 150,000 Texans may be aging in place across the state and at some point in the future will be needing assistance.
The Tarrant Co. AAA found the local TMHMR had funded a needs assessment of their service area last year and used those numbers as the basis for developing a marketing plan of who may be served, how they may be served and what services are currently available. The findings in Tarrant County are similar to those we have found in most other areas. The following is the excerpt on the market analysis from their plan. The complete plan may be found in the appendices.
MARKET ANALYSIS
Market Definition
Aging with DD. The Coalition has identified two primary focuses for the work it has undertaken:
· aging caregivers of people with developmental disabilities, and
· people with developmental disabilities who are experiencing problems associated with aging.
General demographics show that approximately 3% of the general population suffer from some degree of mental retardation, one of the best-documented developmental disabilities. Of that number, 90% are estimated to have only a mild degree of impairment. Further, general demographic data indicates that approximately 12% of the population is age 60+.
Using these statistics as a basis from which to size the market, it would appear that approximately 135,000 Tarrant County citizens are aged 60+. And, around 3% of these, or 4050, have family member(s) with some type of mental retardation. Because mental retardation is only one type of developmental disability, it is not unreasonable to believe that 6,000+ families headed by people aged 60+ also have family members with some type of developmental disability.
Using the demographic averages provided by the Arc, we believe that 38,000 Tarrant County citizens have some degree of mental retardation, with approximately 3,800 of those having a profound to moderate impairment. And, applying the senior demographics to this number, approximately 4560 persons living in Tarrant county have a mental retardation and are aged 60+.
Currently, Tarrant County MHMR Services provides mental retardation services to approximately 1,177 individuals, or about 3% of those affected by these disorders. The agency is the largest service provider for adults in Tarrant County. Public schools in Tarrant County provide special education services to approximately 29,200 school-age children. An estimated 7,300 of these have developmental disabilities.
From these numbers, it is clear that only about 22% of individuals with mental retardation are likely to presently receive any services at all, and the majority of these (86%) are children. Thus, it is reasonable to believe that there may be several thousand adults with DD in Tarrant County who are either living with aging caregivers or who are experiencing problems associated with aging, and who are currently not receiving any formal services.
In marketing the Coalition's initiatives, our strengths include:
· The use of newspapers, television and radio for public service announcements, and
· Our member agencies for dissemination of messages to their own staff and clients.
The Coalition has several weaknesses in marketing its initiatives, including:
· Many of the people who need to hear its messages are not currently engaged in any service delivery systems, and may be resistant to hearing the messages.
· The tendency of families to procrastinate when it comes to making legal and financial plans.
· Complacency on the part of some families, leading them to believe that the government will automatically step in to care for their loved one when they are no longer able to do so.
The Coalition has two different primary messages, with different customers for each. These include:
1. Advanced planning is necessary to preserve the options for your loved one with DD. Customers for this message include:
· Families and other individuals caring for older people with DD. 40+ years ago, many parents who had a child with DD were told to "put the child away" in an institution. Many parents refused to do so, and because community based services and public education were scarce, these children grew up and remained at home, outside the service delivery system. For many, there was an expectation that the parents would outlive their child with DD. These same families are facing changing needs, as the parents age and begin to need assistance themselves, and as the family member with DD begins to experiencing aging issues themselves. But, because of a history of independence, these families may be reluctant to heed the call to return to the service providers who let them down so badly years ago, and to begin making long term plans.
· Siblings of people with DD who are currently receiving care from parents or other aging family members. For many, their parents expect them to take on the care of their sibling when their parents are no longer able. For some, there is considerable ambivalence about this expectation. These siblings may be more ready to hear the message about the need for planning, and may be able to influence their parents to begin the process.
· Families with school-age and younger children with DD. These families may put off thinking about their and their children's senior years, but they are in the best position to develop viable plans to provide the financial resources their loved ones will need to have the best options during their later years.
2. You will be challenged to provide services to a new population. Customers for this message are DD and Aging Service Providers (for messages pertaining to bridging services, cross-training of staff, and the need for advanced financial planning). The issues for the providers include needing to expand their scope to include services for a group that they are unaccustomed to serving. For many, the reticence may be linked to restrictions placed upon them by funding sources. The entire group needs to be educated about the services each offers the cost of those services, and the potential for outside funding and supports to enable service provision to succeed.
There do not appear to be any significant competing agencies in this arena at this time. However, the greatest competitor for any service provider is the prospective customers themselves. For most services, prospective customers essentially choose between performing the service for themselves or hiring someone else to do it for them. For the Coalition's targeted group of families currently caring for members with DD, the competition is the family. And, these families have already chosen the "do-it-yourself" approach over utilizing outside providers.
NOTE: It is important to remember that all need assessments for the coalition should have a multi-focus. The needs should be of those aging individuals with dd; family caregivers; and the management and direct service staff of the agencies that are collaborating to open the available community programs and supports or to develop additional options in the future.
Training opportunities to teach and to become aware of the available community services, how these are accessed, who is eligible, and where do you go to get them is one of the most important components of developing the local projects. It becomes apparent that most families and professionals have little awareness of the levels of impact that aging imposes on the population with developmental disabilities; older family members; and the direct service providers. Early in this guidebook, a brief overview on physical aging was provided. However, that is only one piece of the mosaic that makes up the project. The Texoma AAA has developed the most extensive training component on the array of community services and support programs of the first 12 projects. Their training component covered 26 different community programs and services and was presented in three half-day training sessions over a three-month period. One session per month that had multiple presentations. TDoA has contracted with Texoma to revise and refine their training component and it will be available to all AAAs by September 1999. Twenty-five of the twenty-six presenters are available within the state of Texas. Other AAA projects also had local training events and some used outside expertise to cover topics that were of interest to their coalitions. A list of these individuals and their areas of expertise will be provided at the end of this section.
Some examples of what projects have considered as needed training based on earlier efforts. In Virginia, community coalitions in four counties focused on these training needs:
· How to develop and share resources in the community with other organizations and agencies
· Case management (discharge planning, care plan development, crisis intervention, dementia)
· Integrating older clients with developmental disabilities into aging-related services
· What resources and services are available in the DD system that could be shared with the Aging Network and what resources and services are available from other community agencies
· Ethical issues including confidentiality
· Utilizing clients as "service providers" for other clients
· Accessibility issues and adaptive equipment. assistive devices
· Legal issues (including guardianship, wills, permanency planning, and client rights)
· Uniform functional assessment of aging client and hose with developmental disabilities
· Personal assistance (home health, home chore. etc.)
· Curriculum development in skills training for home visitors and aides record keeping, needs assessment and advocacy)
· Breaking barriers to service integration and effecting creative policy changes
· How to deal with behavioral challenges in older persons
· How to allow the older adult with develop-mental disabilities to "retire" from services (i.e., engage in leisure activities rather than vocational rehabilitation)
· Caregiver resources and support for families (including respite and permanency planning)
· Basic processes of aging
· Adverse drug reactions (ADRs) and geropharmacy
· Day support services
· Health and medical issues of later life (including medication management)
These are not exhaustive lists and do not focus much on the needs for education and awareness for individuals aging with developmental disabilities or elderly family members, or care givers instead on the need to learn of the agency staff and service providers.
Many of the members of the statewide Consultant Committee on the Aging and Developmental Disabilities Project were invited to participate because of their experiences and expertise. These members may be available to provide training and awareness on their specific services or programs.
Dr. Martha Sabin
Beaumont State Center
1210 Longfellow #117
Beaumont, Texas 77706
(409)- 784-5474
Ms. Gwen Koch
Foundation for the Retarded
3550 West Dallas
Houston, Texas 77019
(713) 525-8485
Ms. Barbara Ellis
Texas Money Management Project
Family Eldercare
3710 Cedar, Suite 229
Austin, Texas 78705
(512) 450- 0884 ext. 118
Ms. Chris Kyker
P.O. Box 5996
Abilene, Texas 79608
(915) 691-0855
Mr. Rick Berkobien
Assistant Director
The National Association of Retarded Citizens
500 E. Border, Suite 300
Arlington, Texas 76010
(817) 261-6003
Ms. Veronda Dureden
Director Alzheimer's Program
Tx. Dept. of Health, Bureau of Chronic Disease Prevention
1100 West 49th Street
Austin, Texas 78756
(512) 458-7324
Ms. Norma Plascencia Almanza
Disability Outreach Coordinator
Texas Department of Insurance
Consumer Education
P.O. Box 149091
Austin, Texas 78714
Nora Hernandez
The Arc of Texas
Jefferson Bldg
1600 W. 38th St., S-200
Austin, Texas 78731
512-454-6694.
Gaylen Brewer and Dr. Pat Craig
TMHMR
Austin Texas
512-206-4854.
Wayne Spahn
ADAPT of Texas
1319 LaMarr Square Drive Suite 101
Austin, TX 78704
Phone: 512-442-0252
Daniel Scaraborough
University of Texas
Dept. of Special Ed. Assistive Technology Program
Austin, TX
Phone: 512-471-7621
Jonas Schwartz
United Cerebral Palsy
900 Congress Suite 220
Austin, TX 78701
Phone: 512-472-8696
These individuals have worked with the project for the first two years of community activities and most were on-board by the summer of 1997.
Each of the twelve projects has developed local training options based on their regional needs as determined by their coalition members. Additional training components may be found in the set of resource materials that were provided to the twenty-eight AAAs in the summer of 1997. There are a small number of people across the country who have focused their skills on developing training workshops and seminar on issues of aging and developmental disabilities. Some of the projects have contracted a few of these individuals to conduct training on-site. These include:
Lou Ellen Ruocco, St. Louis ARC (e-mail lruocco191@aol.com)
Medical issues, Alzheimer's and Dementia, Health issues and Down syndrome,
Pharmacology, Advanced directives
Understanding Developmental Disabilities
The Aging Process and its Impact on Older Persons with DD
Tim Bruckner, Lakeshore Community (e-mail Bruckner@aol.com)
Intensive workshop on advanced directives 2-8 hours.
Rick Berkobien, ARC-US (800-433-5255)
Advance directives -short version
Futures planning
Estate planning
Daniel Scarobrough, (UT at Austin-University Affiliated Program) Director of their technology program at the UAP. (512-471-7621)
Assistive Devices to Make Life Easier
Bob Daughtery, Chartered Lifetime Assistance Planning (KYPLAN@aol.com)
Special Needs Trusts
Alan Factor, University of Illinois at Chicago (312- 413-1510)
Information Dissemination
Coalition Building
Housing Issues
Family Supports
Understanding Developmental Disabilities
The Aging Process and its Impact on Older Persons with DD
Gwen Koch, Foundation for the Retarded Houston TX , (713- 525-8485).
Estate planning, wills, trusts, power of attorney.
Edward Ansello, eansello@gems.vcu.edu
Collaborative efforts between aging and developmental disabilities systems.
Matthew P. Janicki, mpjzj@aol.com
Community coalition building
Dementia assessment and care
Program and service design
Family/primary carer assistance
Jim Stone Third Age Inc. (606- 273-9656) jastone@iglou.com
Coalition Building-Systems Change
Community Need Assessments
Understanding Developmental Disabilities
The Aging Process and its Impact on Older Persons with DD
Working with family carers and people with disabilities, focus groups and one on one technique.
Housing Options-Ownership, sharing, or communal.
Developing individualized options and supports for the aging population with dd in the existing community structure.
Planning care after Older Parents Die
Funding options and resources.
Workshops, Seminars and Conferences on Aging and DD-the total package.
The Rehabilitation Research and Training Center on Aging and Mental Retardation (312- 413-1510)
University of Illinois at Chicago
Eleven years of research and demonstration efforts in aging and mental retardation issues. Resource for technical assistance and materials and documents.
From June 01, 1997 through May 31, 1999, twelve Area Agencies on Aging have successfully completed the request for proposals issued by the Texas Department on Aging. The following are very brief highlights of accomplishments and achievements over the past twelve to twenty-four months. Each site has achieved their current year goals and objectives and are moving into the next phase of their projects.
The 12 projects have worked to develop and maintain coalition workgroups in each area agency on aging. In each AAA there is formal strucutre of interagency members who are participating in three areas to build local experience and expertise in sharing the supports for aging Texans with developmental disabilities and their caregivers. Data from TMHMR indicates up to 10,000 aging people with developmental disabilities over the age of fifty may be impacted by these projects in the future. The projects have impacted the system of services in their communities and provided new awareness and education on serving this target group. At the conclusion of this year, coordination of services have been provided to 10 individuals and families in Texoma matching people with needs to services that address the needs, scheduled on-going respite services for six individuals and families have been provided in Central Texas, professional financial planning services have been provided to six families in Tarrant Co.
Coordinated services and supports are planned to begin at the end of the second project year and continue on at the community level. The projects have leveraged public and private monies to assist in their efforts. Over $230,000 has been generated as matching funds including local grants and cash contributions. Central Texas has received $10,000 in community block grant funding, and $8,000 from local county governments. Bexar Co. has received a $10,000 start-up initiative from the local United Way. Texoma has worked with Austin College to participate in an international study on the effect on Vitamin E on aging people with Down syndrome. Funding for this project is $40,000 annually for 1-3years, with be announced by December 1999.
Impacts on other agencies have been accomplished in each AAA by the number of agencies participating in the coalitions. Approximately 1500 agencies have received information about the local projects and been invited to the meetings. Now with 12 projects working, over 360 agencies are involved. These partnerships include those basic agencies, private and public direct service agencies, local government, state representative staff, colleges and universities, individuals with disabilities and advocacy groups, parents and other family caregivers. All the AAAs report there is a new willingness to work together and share agency information and expertise. Community agency people are begining to understand how other agencies operate and the services they provide. Examples include Central Texas where the local MH/MR agency took up to 90 days to conduct referral evaluations and are now completing these in less than a week after the coalition described this as a barrier to getting services coordinated. Members of the coalition participated in developing local transportation plans in one county that included the transportation needs of people with disabilities. Texoma has supported the creation of a new chapter of the ARC as a result of the project assessing a lack of advocacy groups in their community. Thirty people have joined this new chapter.
Products developed include: community resource directories, training manuals for (a)cross-training, and (b) understanding the needs for financial planning. Other products include a marketing plan, outreach activities using the Rural Electric Cooperative in Panhandle and South Plains where information about these two projects was inserted in a monthly magazine going to 42,000 rural homes. The Dallas Co. project has been featured in two news articles and a 30 minute radio talk show. Two articles about their new project have been published in Corpus Christi.
There have been barriers and obstacles to these sites during their efforts to develop local working coalitions. These include changes in key personnel at the Area Agencies on Aging where three Executive Directors resigned from their positions, and two project coordinators resigned to move to new careers. It has taken some time to replace these key people and time to bring the new people up to date on where the local projects were. Three to five months was the range of time to employ a new staff person for those sites. The Texas Sunset Committee made recommendations to realign the Texas Department on Aging and to create a Department of Long-Term Care. These recommendations included major changes in other state agencies and the past year was focused in responding to the Sunset recommendations. The impact on local projects included the time allocations of the community leadership responding to those recommendations and trying to determine how the local systems of service delivery may change.
Project information is available on websites at the Texas Department on Aging, Tarrant Co. AAA,and the Central Texas AAA. These projects may be contacted individually for additional information or questions by the following:
Alamo AAA
118 Broadway
San Antonio, TX 78205
210-362-5200
Bexar Co. AAA
118 Broadway
San Antonio, TX 78205
210-362-5207
Central Texas AAA
302 East Central
PO Box 729
Belton, TX. 76513
254-939-1886
Coastal Bend AAA
2910 Leopard
PO Box 9909
Corpus Christi, TX 78469
512-883-5743
Dallas Co. AAA
400 N. St. Paul Suite 200
Dallas, TX 75201-6804
214-871-5065
East Texas AAA
3800 Stone Road
Kilgore, TX 75662
903-983-1440
North Central TX AAA
616 Six Flags Drive
Arlington, TX 76011
817-695-9194
Panhandle AAA
415 West 8th.
Amarillo, TX 79101
806-372-3381
South Plains AAA
1323 58th. St
.
Lubbock, TX 79412
806-762-8721
Tarrant Co AAA
210 East Ninth St.
Ft. Worth, TX 76201
817-258-8081
Texoma AAA
3201 Texoma Pkway Suite 220
Sherman, TX 75090
903-813-3581.
The ideal support system for the older population with developmental disabilities builds on a foundation of individualized preferences and choices that reflect the person's cultural, environmental, and life experiences. These supports include remaining active in the neighborhood and the local community for as long as possible without experiencing isolation, abuse, neglect, or losing control of one's later life choices. This includes the ability to communicate, "I want, I like, I need, or I don't want, I don't like and I don't need!" The community has many varied resources that may open a new world of opportunity for involvement of the older person or persons who are transitioning into the later life years. The choices and options should be self-selected and preferred including social, recreational, and leisure activities. Many older people with developmental disabilities have demonstrated the ability to grow and learn when provided the chance to participate in self-selecting programs and services that include both formal and informal supports. The older population's needs include: homes, medical services, social, recreational, and leisure activities, opportunities for work if desired, friends and family, on request transportation, and to interact in decisions affecting their futures. The majority of aging and older people with developmental disabilities are not in the formal service systems.
Older family caregivers have a different set of needs for supports and services. Family members need assistance in learning what services are available for both themselves and their family member with developmental disabilities. Elderly and aging caregivers need to understand many different areas including wills and trusts, networking, understanding their child's aging processes, and how to access available and appropriate support services and programs.
The major goal of the Texas Model Project is:
To develop an integrated service system that older people with developmental disabilities and older persons caring for persons with developmental disabilities can access from single or multiple entry points.
All of the Area Agencies on Aging in Texas have in place a core of services and staff that can impact the lives of aging and older Texans with developmental disabilities, elderly parents or family caregivers who may be responsible for grandchildren with developmental disabilities. Support coordination may be available through their core services. This core is:
(a) case management;
(b) intake and assistance;
(c) benefits counseling; and
(d) the network of volunteer ombudsman.
These community providers may be the first line for coordinating supports and services to the current invisible population. However, to assure all appropriate supports and services are accessible, the Texas Model Project must create and maintain a working partnership with other vital community services and programs. These include the local MHMR agencies, human or social services, private providers, and any and all other generic support systems that may be needed on an individual basis at anytime. The current service systems of the local community will determine what agencies are available to be involved in the Coalition membership. Working together and sharing information, experiences, and expertise as well as referrals and resources develops this working community partnership.
The model builds this system on the resources and supports in the community when available or seeks to develop new supports as necessary by reaching out to other agencies and initiating interagency activities over a period of months. The model should concentrate on four basic foundation activities at the start.
These activities are:
Implementing an aging and developmental disabilities model project will have the following impacts:
(1) Develop opportunities for aging and older individuals with developmental disabilities and their families to participate to their full ability in the later life year's activities and supports to access their community's resources and activities. Retirement, volunteer work, or participation in age appropriate activities of their choosing are just a few of the options that could be available to this target group.
(2) Coalition efforts will improve access to the quality of care for people with developmental disabilities by training care professionals in the needs of both individuals and families.
(3) Coalition members, policy makers, and program administrators will be made aware of the unique needs of the aging and older population with MR/DD in the state through training, information sharing, and public meetings where program staff, advocates, aging individuals, and family members express their needs and concerns.
(4) Improve the outreach and supports to older families, including underserved minority and rural families, who are caring for a relative with developmental disabilities, by focusing on the local aging service systems, mr/dd agencies, social services, and the generic resource agencies.
(5) Training, information, and assistance for families for continued support after death or the inability of the parents to continue day to day formal and informal supports. For example, real estate and family homes are major resources for aging and elderly people; however, elderly homeowners nationwide have rarely used the reverse mortgage option to convert their dwelling into income for a fixed time period or life, and to stay there. Very few families have made necessary arrangements for futures planning, wills, estate plans, trusts, or advance directives for health care.
(6) Interagency service coordination and service delivery will be supported by establishing working relationships to flow across service systems and enhance access to aging network services and programs for older adults with developmental disabilities.
(7) Cross training should focus on professionals working in the field of aging, developmental disabilities, and other generic services. The training will assist staff to understand the aging processes, needs of aging and older persons with MR/DD and family caregivers, and how to collaborate to access community programs and resources in a timely way.
These are examples of possible activities and new projects that could be developed. However, each region has an understanding of what is needed in their communities at this time to enhance the later life years of the target population.
(A) The population with Down syndrome who may be experiencing dementia of the Alzheimer's type. Research on this is being conducted at the University of Texas at Houston. Some of the projects may wish to explore connecting to that project.
(B) Texas has a significant number of individuals who have exceeded the life expectancy of 55 years; accessing non-traditional funding and existing programs could benefit these individuals and their communities. The McKinney Homeless Act's eighteen-month transitional housing projects funded through HUD may be a viable solution to lack of money to support this population today.
(C) Exploring individual intergenerational support systems linking aging and older persons with and without disabilities with small, single parent families to share a residence and provide supports to one another in a rural community by piloting a demonstration model using the community reclamation program with HUD.
(D) Cooperative efforts could be explored for distance learning and training of staff in rural and remote areas of the state to better address the needs of this growing population. Funding may come from the local community or from any of a large number of foundations located in Texas.
Each of the Texas Area Agencies on Aging were provided a basic resource library of books, articles, curriculum, and video tapes that would provide information and awareness of the aging population with developmental disabilities. The majority of these items were ordered from the Clearinghouse on Aging and Developmental Disabilities of the Rehabilitation Research and Training Center on Aging and Mental Retardation. Additional items have been ordered from the American Association on Mental Retardation, the New York Council on Developmental Disabilities, the New York Office on Mental Retardation and Developmental Disabilities, The Virginia Center on Aging, Dignity by Design, Inc., Brooks Publishing Company, and Arthur Campbell Jr. Contact information for each of these is provided below.
American Association on Mental Retardation
444 North Capitol Street, NW, Suite 846
Washington, DC, 20001
Phone (800)-424-3688
Arthur Campbell Jr.
515 S. 18TH Street, Apt. 122
Louisville, KY 40203
502-583-6470
E-mail- Acampb8627@ aol.com Video, "If I Can't Do It".
Brookes Publishing Company, Inc. Baltimore, MD
Dignity by Design
Dignity Systems USA A Division of National Lifetime Assistance Centers, Inc.
Corporate Office
7340 E. 82nd Street, Suite B
Indianapolis, IN 46256
Phone (888)-248-7878
New York Office of Mental Retardation and Developmental Disabilities
Office of Special Projects
44 Holland Ave.
ALBANY NY 12229
Phone (518)-473-7855
New York State Developmental Disabilities Planning Council
155 Washington Ave.
Albany, NY 12210
Phone(518)-432-8233-video "When People with Developmental DisabilitiesAge"
RRTC Clearinghouse on Aging and Developmental Disabilities
Institute on Disability and Human Development University of Illinois at Chicago
M/C 626
1640 Roosevelt Road
Chicago, IL 60608-6904
Phone (800)-996-8845
Virginia Center on Aging
Medical College of VA
VCU
Richmond, VA 23298-0229
Phone (804) 828-1525
Additional information may be found at the following websites on the Internet:
The ARC-US at http://www.TheArc.org
Third Age, Inc. at http://www.thirdageinc.com/3rdage
International Association for the Scientific Study of Intellectual Disabilities, Special Interest Research Group on Aging and Intellectual Disabilities at http://www.thirdageinc.com/sirgaid
RRTC on Aging and Mental Retardation at http://www.uic.edu/orgs/rrtcmr/index.html
AAMR at http://www.aamr.org