Aging & Disability Resource Centers (ADRCs) must embrace our principle of “nothing about us without us” at the national level (by working with NCIL), at the state level (by working with Statewide Independent Living Councils – SILCs), and at the local level (by working with Centers for Independent Living – CILs). This includes a commitment to consumer control, consumer direction, self-determination, autonomy, and dignity of risk for all consumers. It also means that policy decisions about serving people with disabilities must include the disability community.
All ADRCs must serve seniors and people of all disabilities of all ages from day one and every day. Existing ADRCs that have not adhered to this and all key elements are not truly ADRCs because they are not cross-age and cross-disability.
All ADRCs must implement the “No Wrong Door” model versus the “Single Point of Entry” model.
All ADRCs’ design, development, and implementation are required to include a mandatory partnership between the senior agencies and CILs & SILCs, unless one entity chooses not to participate.
Specifically, NCIL’s ADRC Subcommittee will work with Administration for Community Living (ACL) / Independent Living Administration (ILA) on the development of the guidelines that reinforce this partnership at the federal, state and local levels.
Updated: March 23, 2017.
NCIL’s ADRC Principles
1. ADRCs embrace our principle of “Nothing About Us Without Us” on a national (NCIL) , state, and local level (CILs and SILCs)
- This includes a commitment to consumer control, consumer direction, self-determination, autonomy and dignity of risk for all consumers.
- It also means that policy decisions about serving people with disabilities must include the disability community.
2. All ADRCs must serve seniors and people of all disabilities from day 1.
- Existing ADRCs that have not adhered to this and all key elements will include adherence during the next federal fiscal year.
3. All ADRCs implement the “No Wrong Door” model versus the “Single Point of Entry” model.
4. All ADRCs’ design, development and implementation are required to include a mandatory partnership between the senior agencies and ILCs & SILCs, unless one entity chooses not to participate.
5. AoA will work with NCIL for the development of the guidelines that reinforce this partnership outlined in (4) at the federal, state and local levels.
CIL and AAA Areas for Collaboration
There are key issues that Centers for Independent Living (CILs) and disability groups are very active in advocating for change. Most, if not all, of these issues are the same for the Areas Agencies on Aging (AAAs) and aging groups. It is these similarities that are the key to these collaborative partnerships. The following are 13 examples that you can use as a foundation to build upon.
Transportation
Affordable, available and accessible transportation is needed for the growing aging and disability populations, especially those who are no longer able to drive. Both groups experience a loss of independence when they can no longer drive themselves to do shopping, visit family and friends, do recreational activities, or go to medical appointments.
The demand for affordable, available and accessible transportation is only going to increase. There is a need to understand the procedures to utilize public transportation or to even know about the availability of public and/or private transportation services in their areas.
Depending on the area and the services that both sides provide, there is an opportunity for both sides to work together to develop a program to meet all the needs.
Employment
Seniors and people with disabilities are having to work due to many factors; some out of choice, others out of need. As we age, age related changes (physical, sensory, mobility), can affect our ability to complete work tasks. CILs have the experience working with individuals through vocational rehabilitation in providing work place accommodations for those in need. CILs can apply this knowledge by assisting the older employee and their employer with ways to make work place accommodations, provide names of contractors and vendors who can provide the modifications that may be needed.
Jointly both can examine the current programs that provide these services to ensure they meet the needs of elderly consumers. Both sides can work together to provide each other with referrals for services.
Emergency Preparedness
All too often in emergencies, the concerns of people with disabilities and seniors are overlooked or put aside. In areas ranging from the accessibility of emergency information to the evacuation plans, great urgency surrounds the need for responding to these concerns in all planning, preparedness, response, recovery, and mitigation activities. Prior planning and collaboration between both groups will help to prevent poor performance. Education on how to shelter in place may prove to be beneficial in the event seniors and people with disabilities are unable to evacuate.
Disability and aging organizations have unique and credible connections with the people they support and expertise with delivering services to them. While their unique skills and understanding are invaluable they are an often- overlooked resource for emergency planning, preparedness, response, recovery and mitigation activities.
To correct this situation, disability and aging organizations must be included as partners in working with local, regional, state, and national public and private response agencies. This collaborative partnership can take steps towards establishing a collaborative relationship with emergency management agencies to ensure that there is understanding and clarity as to the concerns and needs of people with disabilities and seniors are effectively addressed in times of disaster.
Housing
As people age, they may often acquire disabilities or limitations that interfere with aging in place successfully. Both can work together to intervene and assist older adults in remaining independent in their own homes. It is important that each agency is familiar with the other and aware of the services each provides to allow each to make appropriate cross-referrals. Each has expertise that benefits older adults; the AAAs are familiar with challenges an older adult encounters and CILs are knowledgeable in promoting independence. Together they can work to help older adults remain independent in their homes by referring or providing personal care, housekeeping services, environmental adaptations, support groups, caregiver classes, help to obtain and learn to use assistive devices, and peer support. By working together, more senior may remain in their homes and avoid hospitalizations that may lead to nursing home placement.
Accessibility (Universal Design and Visitability Guidelines)
Universal design and visit ability guidelines benefit people of all ages regardless of functional ability or disability. Both groups can support these concepts by working together to increase awareness among the public, community leaders, architects, contractors, and building associations. Together, they can do public service announcements about these concepts, and attend state legislative meetings to advocate for change.
Community Education & Awareness (regarding elders and disability rights, etc.)
According to many AAAs, they have not been strong in self-advocacy, community awareness and education regarding their rights. CILs and disability groups have a long history of expertise working to increase the rights of people with disabilities. CILs can provide awareness and etiquette training to staff, caregivers, Meals on Wheels personnel, home health and personal care aids and to employers. CILs can offer self-advocacy training to senior consumers to help them obtain the services they need. Together each group can jointly provide education and awareness about disabilities to the community.
Deinstitutionalization
Typically AAAs do not have much experience with this process. Historically, the approach used by the aging network for providing services has been medically based and professionally directed. The consumer was told what services they needed and which one would be paid for by the insurance, Medicaid, or Medicare. Now with “Money Follows the Person” and “Community Choice” grants, some healthcare professionals and service providers will need time to get used to the transition. CILs can be instrumental in assisting in this transitional phase with the skills and talents of their peer supporters and independent living specialist and with their independent living philosophy.
CILs can provide valuable information/training on the concept of consumer choice/consumer directed services. This will help the aging network service providers to fully understand the positive impact these concepts have on consumers and their well-being. Services that are needed by the consumer will be utilized more effectively than those they do not want or feel they need. Training for consumers about this process will help them become more involved and empowered with the decision-making process regarding their services. Consumer training about available services, how to obtain them, etc. should help to relieve the burden of care by the AAAs. With funding for services becoming more difficult to obtain and personnel cutbacks, CILs can promote their existing services or develop new programs that will directly benefit the aging population.
Aging with Disability Issues
With the demand for services increasing, it will be difficult for the aging network to accommodate this increase alone. Assistance from outside agencies will be needed, CILs can be instrumental in providing services to this population. By networking together, CILs will better understand the specific needs, problems and solutions that are unique to seniors. By working together for better services and programs, advocacy, funding, etc. will provide a strong voice and presence to support government policy changes to better quality of life of all people with disabilities regardless of age.
Assistive Technology Acquisition (for consumers)
CILs are knowledgeable about assistive technology and can provide information and training in the obtaining and the use of said technology. Some aging groups may not be aware of the various technologies that can help them improve, restore or maintain their functional abilities. Many service providers outside the rehab personnel are not aware of these technologies and how to acquire them for their consumers successfully without payer denial. This is where CILs can offer training sessions to increase the aging network’s knowledge about various technologies and how to obtain them.
Home Safety & Modification
These issues are mutually important to both groups consumer base. Working together to promote home safety and modifications will provide a stronger voice to public and government officials to encourage policy change to address these issues. Collectively, they can work together to educate the public and advocate for the consumer regarding these issues.
Assisting Caregivers
More and more grandparents are working longer and becoming the primary caregivers for their grandchildren. They are raising their grandchildren for several reasons: the grandchild is disabled, parents are deceased, incarcerated or financially unable. Most aging agencies have experience with elderly consumers’ needs but not children, particularly those with disabilities. CILs are experienced with working with all ages, and most have experience working with the young and disabled. As older adults begin to decline in functional status due to age-related changes and/or chronic conditions, they will need assistance maintaining their own functional status while continuing their caregiver roles. CILs can offer training in assistive technology and acquisition, and information and referral to providers of home modification, respite care, day programs, and personal assistance services to be an added support for grandparents in caregiver roles.
Voting
As an American we each have the right and responsibility to cast our votes and participate in the governing of our communities. Every election affects each one of us. The policies developed and implemented by those we elect impact us every day. Political candidates often talk about many issues that affect us such as quality affordable health care, accessible and affordable housing, affordable and accessible transportation, employment and education. Even though this political acknowledgement is progress, our combined issues are often not in the forefront of many political campaigns. Together we represent a wide range of common values and issues important to many Americans. We are often fragmented over issues and fail to see the greater impact of being united. We need to unify and not allow inner diversities to hinder our ability to affect political outcomes. Politicians need to see us an influential voting group. Together we can become the largest voting group in America, and have the potential to influence issues, demand attention from political candidates, and even determine the outcome of elections. If we want to be counted, have equal access, and have the right to maintain our own individual choices in daily life, then we should follow those immortal words of Justin Dart, father of the ADA; “Vote as if your life depends on it, because it does”.
Collaborative writing grants for funding additional services
Rather than competing for funding, work together to develop grants that would meet a dual purpose of helping people of all ages with and without disabilities. By talking to each other we can find out what areas need to be addressed to meet the needs of our consumers. We can explore any private organizations that would support joint efforts to serve multigenerational groups. By providing additional letters of support, both groups may have a greater chance of obtaining funding for these purposes.
Comparative Analysis of Services / Programs Offered by Area Agencies on Aging (AAAs) and Centers for Independent Living (CILs)
The following will compare the services offered by each agency. CILs will find that there are many similar services offered by the AAAs. In their local areas, AAAs contract out many services to other providers. CILs have a great opportunity to become contract service providers.
CILs’ experience and success in providing services to people of all ages with disabilities can be a valuable asset to the AAAs along with providing additional financial support to CILs. CILs and AAAs need to become aware of one another’s organizational structure, purpose and services in order to develop a working collaboration. This is as easy as a phone call to the Executive Director of either agency in your area.
Eligible Participants / Consumer
- AAAs: Elder persons age 60+ who are frail, live alone, and have low economic status
- CILs: Anyone with a disability (physical, mental or cognitive) of any age
Core Services Provided
AAAs:
- Information & Access Services
- Nutritional Services
- In-Home Services
- Preventive Health Services
CILs:
- Information & Referral
- Individual & Systems Advocacy
- Independent Living Skills Training
- Peer Support
Additional Services Offered
AAAs:
- Information & Referral and Assistance
- Health Insurance Counseling
- Client Assessment
- Care Management
- Transportation
- Caregiver Support
- Retirement Planning & Education
- Employment Services
- Senior Centers
- Congregate Meals
- Adult Day Care Services
- Volunteer Opportunities
- Meals on Wheels
- Chore Services
- Telephone Reassurances
- Friendly Visiting
- Energy Assistance & Weatherization
- Emergency Response Systems
- Home Health Services
- Personal Care Services
- Respite Care
- Senior Housing
- Alternate Community-Based Living Facilities
- Legal Services
- Elder Abuse Prevention
- Ombudsmen Services
CILs:
- Information Access/Technology
- Transportation Assistance
- Independent Living Skills Training
- Vocational Assistance
- Financial Management and Securing Income
- Mental Health Support Services
- Volunteer Program
- Community Awareness of Disability Issues
- Cooking & Nutrition Programs
- Personal Attendant Management
- Assistive Technology Information & Services
- Accessible Housing Information
- Home Modification Information
- Accessibility Information
- Recreational Opportunities
- Educational Transition
- Educational Enhancement Services
- Deaf Services (sign language interpreting, awareness, advocacy)
- Brailling Services
- Computer Usage
- Social Development Skills
- Mobility Training
- Legal Service Information
- ADA Compliance Consultation
Areas of Programmatic Similarity
Both may assist their perspective participants in the following:
- Legal Services
- Housing
- Transportation
- Personal Assistance Programs
- Outreach Programs
- Employment Opportunities
- Education
- Counseling Services
- Advocacy Services
- Services for Multiple Disabilities
- Caregivers
- Home Repair, Renovation, Modification
- Mental Health Services
- Both can work in the following areas:
- Partner with other consumer advocacy groups
- Partner with other community agencies (not necessarily with each other)
- Serve as a visible focal point for their perspective participants/consumers
- Promote certain issues to remove barriers to participant/consumer participation
- Promote public policy, legislation, and private sector initiatives that address the needs and priorities of the participant/consumer
- Participant/consumer civil and benefit rights, decrease discrimination due to age, disability, and improve quality of life
- Become involved in research and training to improve service provision, coordination, etc
- Become involved with Medicaid, Community Waiver Grants funding
- Promote universal design
- Promote accessible and affordable community transportation
- Promote accessible and affordable community housing
- Education of emergency and disaster preparedness for their participants/consumers
Areas of Programmatic Difference
Population Served
- AAAs: Elderly persons, age 60+. Those most in need (frail, lives alone, low income status)
- CILs: Anyone with a disability. In 2003, 22.5% of people served by CILs were age 65 and over (40,000 out of 195,000 consumers)
Identification / Label of Person Served
- AAAs: Client, Patient, Resident
- CILs: Consumer, Participant
Organizational Structure
- AAAs: Professional Control/Directed
- CILs: Consumer Control/Self Directed
Community & Self Perceptions of the Person with a Disability
- AAAs: A person who, as a result of an impairment, is unable to participate in a variety of roles due to functional limitations – needs rehabilitation, personal assistance or other services.
- CILs: A person identified as having an impairment, who as a result of community perceptions and structural barriers is restricted from participating in a variety of roles, including roles related to education, employment, recreation, social, worship, and civic activities, etc.
Nursing Home Placement
- AAAs: person with impairment referred to nursing home when believed no longer able to live alone safely or needs skilled care.
- CILs: De-institutionalization: Community inclusion with home-based care while supporting greater self-determination & choice for the individual with limitations.
Service Provision
- AAAs: Provide direct services and contract with local providers to furnish other professional services in the community for elderly consumers; a rehabilitative approach.
- CILs: Provide direct services by people with disabilities that encourage individual self sufficiency, consumer-controlled in the least restrictive environment; an independent living approach.
Housing
- AAAs: Assist independent elderly to obtain housing designed to accommodate their needs and preferences and alternative community-based living facilities that bridge the gaps between independent living and nursing homes.
- CILs: Prohibited to run/own residential housing but promotes accessible housing programs. Purpose of CIL is to promote independent living. Works with private, local, state and federal agencies to develop accessible housing.
Agency Service Providers
- AAAs: Healthcare professional staff/case managers
- CILs: Independent living specialists and peer counselors
Service Plans
- AAAs: Case manager establishes the plan of care.
- CILs: Independent Living Plans are established by each consumer, unless the consumer chooses to waive a plan.
