Aging & Disability: Addressing the Needs of a Growing Population

At four AM, Jessie Simpkins" alarm sounds, waking her out of a deep sleep. In a fog, she makes her way to her grandson"s room, for whom she is the primary caregiver. She changes his clothes and feeds him. Out of the ordinary? Maybe not. Many grandmothers take part in the care of their grandchildren. What isn"t ordinary is that Simpkins is 69 years old and her grandson, Kaimel Simpkins, is 25 years old. Ms. Simpkins has been providing Kaimel, KK to friends and family, with round-the-clock care since he was injured in a car accident at 18 months old. He has severe physical disabilities and needs help to breath and eat.

While Simpkins" day begins at 4 AM when she gets up to change and feed KK, she also has to administer medication and suction his breathing airway. At 8 AM, the process is repeated. At 10 AM, when Certified Nursing Assistants (CNAs) arrive, Simpkins does her best to get some much needed rest while the CNAs help with the physical part of KK"s care, such as moving and bathing him. While the CNAs provide much needed assistance, their time in the home is not "time off" for Simpkins. Because the CNAs are only certified to administer CPR, Simpkins is required to be present throughout the duration of their visit. She must be there to suction his tracheotomy and manage his meals through a feeding tube. When the CNAs leave at 8 PM, Simpkins talks to KK and says a prayer with him before heading off to bed. At midnight, she gets up again for a feeding. At 4 AM, the routine begins again. At nearly 70 years old, Ms. Simpkins deals with her own health issues in addition to KK"s. Among the most pressing are arthritis, glaucoma, diabetes, aneurysm and respiratory problems. She has also assumed full-time care for KK"s mother, who suffers from a mental illness. All three receive Medicaid and Disability. As the primary caregiver, Simpkins struggles to balance the medical needs of everyone in the household. When asked how she manages to get it all done, she says, "I"m tired, but I won"t complain because [KK] can"t do anything for himself and never complains." Simpkins and her family represent a rapidly increasing segment of the population, those aging individuals who care for family members with physical and developmental disabilities whom are also aging. Consider the following statistics:

"Life expectancy for persons with developmental disabilities has increased from 19 years in the 1930s to 66 years in 1993."1 "Sixty-six percent of all persons age 60+ with down syndrome have been diagnosed with dementia/alzheimer"s disease, while 25% of persons with developmental disabilities age 40+ and without down syndrome have been diagnosed with dementia/alzheimer"s disease."1 "Twenty-six percent of all caregivers of persons with developmental disabilities are 60+, with an additional 35% who live in households of middle-aged caregivers for whom transition issues are near-term considerations."1

In short, persons with physical and developmental disabilities are living longer and often aging faster than their peers. And as both individuals with developmental disabilities and their caregivers age, their need for services increases. In Georgia alone, there are 17,118 known adults with developmental disabilities living with a 60+ caregiver. Furthermore, it is likely that there are even more who are currently not receiving publicly funded services but will most likely need them as they age. Again, Ms. Simpkins is a case in point. While Medicaid provides 10 hours of CNA care for KK every day, Simpkins is finding it more and more difficult to manage the rigorous schedule of care that is required. KK's Medicaid services are maximized and without anyone to help share the responsibility, Simpkins has serious concerns about the future of her family. Further complicating the reality that Simpkin's deteriorating health will one day prevent her from maintaining the current level of care she provides KK is the probability that there will be no one to care for him once she is gone. Simpkins has no relatives that are in a position to help, and while KK can retain ownership of the house when his mother passes, whomever cares for him must also live in the house, according to Habitat guidelines. The thought that her family might be left without a home and a caregiver is a sobering one. Simpkins' situation, and the thousands of others like hers, beg the questions: Who will care for aging persons with disabilities, a growing population, in the event of their caregiver"s debilitating illness or death? What are the resources available to them and how do they find them? We approached the Aging & Developmental Disabilities Coalition for answers and found that they have been building their available resources over the past several years in anticipation of the rapidly growing needs of this segment of the population.

Seeking a Solution

In 2004, the Aging & Developmental Disabilities Coalition was established and held an "Aging for All Symposium," which sought to "help build customized strategies to increase community living options and decrease the need for institutional care."1 Ultimately, the coalition sought to mitigate a potential crisis as more aging persons caring for aging persons with disabilities began to overwhelm the system. The overall objective was to service the needs of the aging, developmental disability and physical disability communities. The symposium identified the following obstacles within the aging and disability communities:

  • Prioritization of Financial Resources — The coalition felt that funding needed to be streamlined in order to enhance services for these families given that their numbers were on the rise, and that they were more likely to thrive in their communities as opposed to institutions.
  • Access to Information — Given the number of organizations providing resources and information to the aging and developmental disabilities populations, the coalition felt that families needed more than one access point to comprehensive information. This paved the way for a No Wrong Door policy, which means that regardless of which organization families go to for help, they will be able to obtain the appropriate information for their needs.
  • Caregiver Supports — Caregivers needed more financial and service supports in order to care for their loved ones in the home.
  • Planning Across the Life Span — Families should be proactive in planning for long-term care in order to maximize publicly funded supports and supplement gaps in those supports so that the adult child with developmental disabilities is fully provided for.
  • Aging in Place — Seventy-five percent of persons with disabilities live in their communities and are cared for by a family member.1 The coalition identified inconsistencies in the availability of care between cities and rural areas. In order to support families in their homes and communities, the reach of resources needed to be expanded.
  • Healthcare Issues — Healthcare providers who understand health problems inherent to developmental disabilities are often ill-equipped to address the complications added by rapid aging, such as dementia and lethargy. This disconnect often forms a barrier between potential resources and aging persons with developmental disabilities.
  • End of Life Care — Planning for an adult child with a developmental disability after the demise of his or her caregiver can require extensive research, proactive planning and expert guidance. Caregivers should have access to the appropriate guidance for planning for their futures and the futures of their adult children with developmental disabilities.

Not surprisingly, each of these obstacles is one that Jessie Simpkins is facing. As an aging caregiver, Simpkins has immediate needs, like additional help inside the home and better transportation options for getting KK to and from his doctors" appointments. She also has several long-term care concerns, like ensuring that KK and his mother have the financial and legal means to continue to be taken care of in their home. Most importantly, Simpkins said she wasn"t sure where to go for answers to her questions and doesn"t have the time or the resources to do much research. Her computer skills are limited at best, and she has little time outside of her current schedule to research her options.

A Streamlined Approach: Aging and Disability Resource Connection (ADRC)

In order to better respond to complex cases like Simpkins', Georgia's Division of Aging Services applied for and received grant funding from the Administration on Aging (AoA) in 2004 to begin two pilot areas serving as Aging and Disability Resource Connections (ADRCs). In 2007, state funding was used to develop a partnership between the Division of Aging Services and the Department of Behavioral Health and Developmental Disabilities and to expand ADRC services. ADRCs serve as the main point of entry, or Gateway, for aging individuals, individuals with disabilities and aging individuals with disabilities. This entity specializes in cataloguing and connecting those in need with all available resources. Utilizing the Enhanced Services Program (ESP) database system that originated within the Division of Aging, the ADRC began the task of adding resources that would be beneficial to individuals with disabilities. According to Cheryl Harris, Gateway/ADRC program coordinator, "There is a great deal of overlap in the services for those aging and those with disabilities. With the combined issue of aging caregivers of adult children with disabilities and aging individuals with disabilities, we felt that offering a unified resource was the next logical step in meeting the growing needs of the developmental disabilities population." Another reason to combine efforts with the Division of Aging was their well-established infrastructure and resource database. Sue Burgess, information services coordinator, said, "The aging services network was already experiencing success with the ESP system, so we devised a plan to add developmental disabilities resource information to the existing database." The resource database was expanded to include resources for persons with disabilities, a tedious process involving thousands of resources. Since then, the ADRCs have amassed a database of 22,000 resources statewide that are managed by the 12 ADRC regions in Georgia. To keep the information up-to-date, each of the 12 ADRCs has a dedicated resource specialist who is charged with making sure that the information in the database is accurate and current. In addition to maintaining access to critical information, the ADRCs emphasize the role of communication and relationship building between field experts and the networks of state and local organizations that provide support. Burgess explains, "In order for the concept of No Wrong Door to be effective, we must ensure that the flow of information is reciprocal among local, regional and state entities." ADRCs go about information exchange in a variety of ways. The ADRC state funding pays for three staff within the Department of Behavioral Health and Developmental Disabilities (DBHDD) to serve as ADRC specialists and to partner with the Area Agencies on Aging. This includes opportunities to attend educational seminars and training about issues that pertain to individuals with developmental disabilities; cross-training staff in both aging and disabilities; quarterly meetings to facilitate the exchange of information between the 12 Georgia regional ADRCs; advisory boards that consist of healthcare providers, field experts and consumers; and of course, the ESP database helps disseminate information. When asked if the ADRC was a comprehensive resource for individuals with developmental disabilities, the response from the developmental disability community ranged from accolades to skepticism. According to Nancy Thaler, executive director of the National Association of State Directors of Developmental Disabilities Services (NASDDDS), while the ADRCs are able to provide assistance to aging developmental disability individuals, many individuals with developmental disabilities will enter the system through another entry point. She stated, "Because individuals with developmental disabilities have been enrolled in public schools since 1976, their families are likely to have knowledge about the developmental disability system and access services directly." She added that most of those who enter the system through the ADRC are individuals on the waiting list or have very mild disabilities and have not qualified for services in the past but may as an aging person with developmental disabilities. Pat Puckett, executive director of the Statewide Independent Living Councils, was unsure about the capabilities of the ADRCs. "For those living with developmental disabilities who need public assistance, I don"t know that the ADRCs can help, except to help them get on a waiting list. Also, I think homogenizing the needs of the different communities is inefficient. An elderly person that needs help with household tasks and transportation is vastly different than a person with cerebral palsy who is trying to live his or her life like everyone else." Robyn Berger, director of the DeKalb Developmental Disabilities Council, called the ADRCs a "wonderful resource," adding that the depth and breadth of the ESP system is unparalleled in the developmental disability community. She noted, "The ADRC doesn"t waste people"s time by referring them to the wrong entities. Because of the ESP system, the collaboration and training that takes place within and between the ADRCs and local and state organizations, they are a viable source of information." Dave Blanchard, executive director of All About Developmental Disabilities (AADD), commented, "For AADD, the ADRC represents a meaningful partnership between developmental disability and aging networks. For families and individuals experiencing the stress of both of these issues, it is one step closer to creating multiple entry points, or a No Wrong Door approach, that offer consistent information about the supports that they oftentimes desperately need." For some, the ADRC is not really about aging anymore. Craig Young, executive director at the Brain and Spinal Injury Trust Fund Commission, feels that the ADRCs are more about identifying community supports for all adults with physical, developmental and psychological disabilities, which includes disabilities caused by aging. As a representative for the physical disability community, Young provides training to the ADRC teams that allows them to not only identify support, but also to help identify undiagnosed brain injuries. "Recently, we provided training to two ADRCs. We made them aware of all available supports, and we included a screening component that would make them aware of the symptoms and behavior that may indicate a brain injury. We develop our trainings to be applicable to everyone, not just to individuals with physical disabilities." Pat Nobbie, deputy director at GCDD wondered if, ultimately, the goal would be to make the ADRC the main point of contact for individuals with developmental disabilities. "I"d like to actually call a few and see what information I am provided with for particular scenarios. I"m particularly interested in whether the staff at the various sites know the full array of developmental disability services in each community, which may consist of small providers." When asked if a single point of entry was part of the plan for ADRCs, Burgess said, "We are working towards that end. We really want this system of resources and information to be a dynamic, community owned service so that the public has integrated access to all long-term services and supports." ADRC MapAfter a lot of discussion about the role of ADRCs and their capabilities within the developmental disability community, the most obvious question was whether the ADRCs would be of any help to Jessie Simpkins. From the developmental disability community perspective, Nobbie explained that "It is unlikely that Jessie would call an ADRC because she already has a waiver. Her best option is to try to work with DCH (Department of Community Health) in order to add more hours to her waiver." However, Sue Burgess, of the ADRC commented that they may be able to help Simpkins. "We encourage individuals to call us when they might need additional services, as Pat suggests. These calls are often extensive and move into the Options Counseling service that we offer. We occasionally get calls from families and help them address issues with services by referring them back to the appropriate agencies, waiver programs or case managers. With the help of our contributing partners at AADD, we also assist families with long-term care planning beyond their current services needs." We can"t help but wonder what might happen if Simpkins did contact the ADRC for additional services. If the No Wrong Door policy is effective, Simpkins would receive the same information regardless of the entity through which she entered the system.

What Happens When I Call My Local ADRC?

So what happens when a caregiver of an individual with developmental disabilities contacts his/her a regional ADRC.
  1. The person calling will talk with a counselor to discuss their particular situation and identify areas of need.
  2. The counselor will then present possible options to meet those needs with the caller, including the various pros and cons of those options, thereby helping the caller make informed decisions.
  3. The counselor will use the ESP database to research all possible resources and supports and will provide this information to the caller.
  4. The counselor may also consult with or refer the individual to one of the state’s developmental disabilities specialists for additional assistance, or may consult with other specialists depending on the individual’s needs.

Have you or someone you know used the adrc for help with services and support? If so, we would love to hear about it. Email us at . For more information about the ADRC or to connect with your region about services, visit www.georgiaadrc.com. 1Aging and Developmental Disability Coalition (2004, November). Aging for All Final Report. Retrieved August 18, 2010