AGING WITH DIGNITY
NAVIGATING THE SYSTEM

The Greater Boston Interfaith Organization (GBIO) urges significant improvements to the systems currently in place for elders and their loved ones to find, understand, and use elder care services. We hold the State of Massachusetts accountable to provide such a system.

Drawing on personal stories from our members, GBIO is engaged in a broad-based campaign to support initiatives that promote aging with dignity for Massachusetts’s residents. GBIO applauds the unanimous passage of the Equal Choices Law. Equal Choice, now being implemented under the proud banner “Community First,” promises to level the playing field in long term care by lifting up the right to care “in the least restrictive setting”.

But none of the systems currently in place or planned can succeed if loved ones, caregivers and elders cannot find them. Citizens are bewildered by a complex system with multiple and confusing entry points and a lack of a uniform system of information, referral, and care management support that is accessible to all. As reported in the recent MIT report, Caring for the Caregivers, “The overwhelming consensus of families and experts alike is that the residents of Massachusetts do not know about the important resources that state government and community-based organizations provide for elders and the families who care for them.”

For these reasons, GBIO is calling upon our State Administration to support a comprehensive reform of the current systems in place that aid citizens in navigating our elder care system.

1. Revise, revamp, maintain and publicize the State’s 800AGEINFO.COM web site. The site as currently constructed does not provide clear, understandable guidance to citizens trying to find out about resources. Budget resources are necessary to maintain, on an annual and continuing basis, a modern, high-quality, user-friendly information resource.
2. Ensure that the State’s central information and referral (I&R) telephone system 1-800-AGE-INFO is publicized and provides adequate and uniform support across all Aging Service Access Points. Few citizens are aware of this resource and the quality of I&R services vary significantly across the State. Therefore, clear standards and oversight for I&R service specialists are required, with adequate training and provision for access to comprehensive and up-to-date information on State and local resources (including city-based Councils on Aging).
3. Ensure I&R services provide help to all citizens. Many citizens of Massachusetts are struggling to support aging parents in other states and need help identifying agencies and resource options. And, we need to ensure that the system provides support for non-English speaking caregivers and elders.
4. Publicize and support the existing Family Caregiver Program under which home visits from a professional caseworker provides elders and caregivers guidance and information (available to all regardless of income). The State must engage in a serious effort to educate the public about this resource and the others described above.

Longer term, many other steps can and must be taken to improve the current system including implementation of a comprehensive pre-admissions counseling program. But the above steps can be addressed now and are our responsibility to ensure Aging With Dignity in Massachusetts.

Navigating the Massachusetts Elder Care System

How the system should work:

• An elder or their caregiver identifies a problem for which they need help: “my elderly mom needs some help with housekeeping”; “I need assistance with transportation”, “my dad lives out of state and I need help determining if it would be better for him to stay there or come live near me”; “my aunt is too frail and forgetful to live alone yet she refuses any in-home help”; etc.
• The elder or caregiver either calls the state’s telephone hotline [1-800-AGE-INFO] or visits the state’s elder care website [800AGEINFO.COM] to get information about their problem. The telephone hotline automatically routes the caller to the appropriate regional agency in your geographic area.
• The elder or caregiver is provided referrals to call at local agencies and programs to receive more specific information, recommendations, direct assistance, and solutions to their problem.
• The elder or caregiver may be assigned a case worker (called a “Family Caregiver Specialist”) to visit the elder or caregiver’s home to do a needs assessment and to strategize solutions to the problem (under the state’s Family Caregiver Program).

Testing whether the system works:

GBIO has heard anecdotes suggesting that this system does not always work. We want to more systematically test how often the system works or fails to work. To do this we are asking GBIO leaders to assist us with the following process:

1. Identify an elder care or caregiver problem for which you need information and help to solve.
2. Call your regional support agency at 1-800-AGE-INFO, ask your questions, and then assess the agency’s responsiveness in terms of clarity, completeness, correctness, and helpfulness in providing answers your questions.
3. Visit the website [800AGEINFO.COM] and navigate the system to assess how “user friendly”, accurate, clear, and helpful it is for solving your problem.
4. If possible, schedule a home visit and assessment from a “Family Caregiver Specialist” so that we can assess how well this direct service program works.