CareGiving Kos: Options for Care-Givers

Crossposted from the Daily Kos group CareGiving Kos.

As the population grows, the economy constricts and services face more serious challenges by the day, some of the options currently available to care-givers may change - some will fade as funding dollars for service programs dwindle, while other opportunities may arise to fill voids or address particularly troublesome unmet needs.1 It's often difficult to keep abreast of developments - navigating the state and federal options is usually a good starting point, but state options vary from state to state and region to region. Federal options aren't always easy to understand, or are limited.

One way we can improve this is to offer feedback and information about opportunities for help and support in our region, and provide feedback on those services and how they worked (or not) for our own care-giving needs. In some instances, we might note services and options that we weren't aware of but which are available - and anyone who has actually tried those services can offer their perspectives on them.

This particular diary is not meant to be a substantive start to that process, but an exploratory one: I'll touch on a couple of programs of national and state/regional scope, provide some information and commentary, and ask for any feedback or additional information. Ideally, folks will add other elements in comments (local/regional/state/federal services, etc.) and include what they know of them, and we'll be able to create a more substantive plan for a follow-up diary (or diaries). Ready?

Ok - jump the squiggle, and let's begin.



Federal Resources

Federal resources are available for various aspects of health care related issues. Care givers may find various elements of use, provided they know where to look. This is just a general listing, which will hopefully provide some initial starting points.



According to the Centers for Medicare & Medicaid Services website, Medicare isn't for everyone. It's for specific populations:

  • people age 65 or older,
  • people under age 65 with certain disabilities, and
  • people of all ages with End-Stage Renal Disease (permanent kidney failure requiring dialysis or a kidney transplant).

It's recommended to go to the actual Medicare website for information about eligibility and up-to-date information about the available programs & coverage.



Note: OK, so technically
Medicaid2 is jointly funded by the states and federal goverment and managed at the state level - it's going to differ in services from state to state, and some states may even have different names for it (MassHealth in MA, Medi-Cal in CA, etc.). Because it has a federal component, I've listed it here.

Medicaid is not available to everyone - even if you're a low-income individual or family. Here's a long-ish excerpt from the basic overview:

Medicaid is available only to certain low-income individuals and families who fit into an eligibility group that is recognized by federal and state law. Medicaid does not pay money to you; instead, it sends payments directly to your health care providers. Depending on your state's rules, you may also be asked to pay a small part of the cost (co-payment) for some medical services.

Medicaid is a state administered program and each state sets its own guidelines regarding eligibility and services. Read more about your state Medicaid program. (See Related Links inside CMS at the bottom of the page.)

Many groups of people are covered by Medicaid. Even within these groups, though, certain requirements must be met. These may include your age, whether you are pregnant, disabled, blind, or aged; your income and resources (like bank accounts, real property, or other items that can be sold for cash); and whether you are a U.S. citizen or a lawfully admitted immigrant. The rules for counting your income and resources vary from state to state and from group to group. There are special rules for those who live in nursing homes and for disabled children living at home.

Your child may be eligible for coverage if he or she is a U.S. citizen or a lawfully admitted immigrant, even if you are not (however, there is a 5-year limit that applies to lawful permanent residents). Eligibility for children is based on the child's status, not the parent's. Also, if someone else's child lives with you, the child may be eligible even if you are not because your income and resources will not count for the child.

In general, you should apply for Medicaid if your income is low and you match one of the descriptions of the Eligibility Groups. (Even if you are not sure whether you qualify, if you or someone in your family needs health care, you should apply for Medicaid and have a qualified caseworker in your state evaluate your situation.)

The page includes links to Medicaid State Program Information and Medicaid State Plan Amendments.

The Office of Minority Health

From the About page:

The Office of Minority Health was created in 1986 and is one of the most significant outcomes of the 1985 Secretary's Task Force Report on Black and Minority Health. The Office is dedicated to improving the health of racial and ethnic minority populations through the development of health policies and programs that will help eliminate health disparities. OMH was reauthorized by the Patient Protection and Affordable Care Act of 2010 (P.L. 111-148).

It's definitely necessary, especially given the widening health disparities in our nation today.

The government is hoping to change that, but - given the currently dysfunctional nature of our Congressional follies - those changes may not be easy and might encounter significant roadblocks.

The resource page provides a few links that a care-giver seeking more information may find relevant.3


The NIHSeniorHealth website "features basic health and wellness information for older adults from the National Institutes of Health." From their About page:

NIHSeniorHealth makes aging-related health information easily accessible for family members and friends seeking reliable, easy to understand online health information. This site was developed by the National Institute on Aging (NIA) and the National Library of Medicine (NLM) both part of the National Institutes of Health (NIH).

NIHSeniorHealth features authoritative and up-to-date health information from Institutes and Centers at NIH. In addition, the American Geriatrics Society provides expert and independent review of some of the material found on this web site. Each health topic includes general background information, open-captioned videos, quizzes and frequently asked questions (FAQs). New topics are added to the site on a regular basis.

One of the potentially useful tools for care-givers and family is their Toolkit for Trainers. From the Toolkit for Trainers main page:

Welcome to the Toolkit for Trainers, a resource developed by the National Institute on Aging. Use these free, easy-to-use training materials to help older adults find reliable, up-to-date online health information on their own. The training features two websites from the National Institutes of Health -- and Trainers can use the toolkit with beginning and intermediate students of the Web.

Care-givers can obviously use the tips to aid their own searches for information.

Native American Health Services

If you think this shouldn't be necessary as a separate component, you'd be both right and wrong: it shouldn't be necessary, but it is. I am unable to do it even a passing justice, particularly in this short piece, so expect something more in depth as a separate piece soon.

The Indian Health Service is the Federal Health Program for Native Americans and Alaska Natives. This, of course, doesn't cover all Native Americans. Note introduction information from the welcome pages:

The Indian Health Service (IHS), an agency within the Department of Health and Human Services, is responsible for providing federal health services to American Indians and Alaska Natives. The provision of health services to members of federally-recognized tribes grew out of the special government-to-government relationship between the federal government and Indian tribes. This relationship, established in 1787, is based on Article I, Section 8 of the Constitution, and has been given form and substance by numerous treaties, laws, Supreme Court decisions, and Executive Orders. The IHS is the principal federal health care provider and health advocate for Indian people, and its goal is to raise their health status to the highest possible level. The IHS provides a comprehensive health service delivery system for approximately 1.9 million American Indians and Alaska Natives who belong to 564 federally recognized tribes in 35 states.

Note the words that I emphasized in bold: federally recognized. If you are a Native American or Alaskan native who happens to be a member of a tribe that is ~not~ federally recognized, you're effective s.o.o.l. (shit-out-of-luck). Assuming you're ~not~ s.o.o.l., you can find more information about office locations for the IHS here. It's not a very big list.

State Resources - Massachusetts


MassHealth is the Massachusetts implementation of Medicaid, managed by the Massachusetts Department of Health and Human Services. The main page has a section in the upper-left corner that identifies the programs and services. Here's a breakdown and links to the relevant eligibility pages:

There are also some programs which depend upon MassHealth eligibility that are specific to care-giving needs.

Massachusetts Executive Office of Elder Affairs

The Massachusetts Executive Office of Elder Affairs is a wealth of state-based resources for elders and care-givers. From their Welcome page:

The information provided on this website is designed to assist elders and their families with answers to questions about services and opportunities available to seniors and their caregivers in Massachusetts. On this website, you can obtain information on caring for an aging parent, securing help for an elderly neighbor, getting nutritious meals delivered to a senior’s home, getting help parenting a grandchild, or learning more about prescription drug programs for elders.

Through the statewide elder network, the Executive Office of Elder Affairs (“Elder Affairs”) provides services locally via Aging Services Access Points (ASAP), Councils on Aging (COA) and senior centers in communities across the Commonwealth. This network reaches out to elders in need of services that include home care and caregiver support, nutrition programs, protective services, health and wellness services, housing options, SHINE counseling (Serving the Health Information Needs of Elders), or counseling services for elders with limited English proficiency.

They have an explicitly defined and well-resourced section on Caregiver Support.

South Shore Elder Services

South Shore Elder Services is an organization that my wife & I worked with during our period as care-givers for my mother-in-law. They are not a state agency:

South Shore Elder Services, Inc. (SSES) recommends and coordinates resources for elders to help them to remain as independent as possible. The private, non-profit agency also advocates for elders and their caregivers, always with the goal of promoting an optimal quality of life.

SSES has a contract with the Massachusetts Executive Office of Elder Affairs (Elder Affairs) to coordinate and/or provide a wide range of in-home services to ill and frail low-income elders in 11 communities on the South Shore. Some other programs, such as Meals on Wheels, are available regardless of income.

Elder Affairs provides the majority of funding–which includes funds from the Commonwealth of Massachusetts and Title III of the Older Americans Act–for SSES’ programs. Grants and contributions from individuals, corporations, and foundations provide additional funding.

Their service area is limited to communities on the Massachusetts "south shore" (south of Boston) and includes the following: Braintree, Cohasset, Hingham, Holbrook, Hull, Milton, Norwell, Quincy, Randolph, Scituate and Weymouth.

Caregiver Homes of Massachusetts

From their information pamphlet:

Caregiver Homes of Massachusetts is a community-based alternative to nursing home care. Here's how it works: You live together with your family member and are responsible for his or her care. We pay you for providing that care and support you with our clinical team.

We begin by carefully screening interested caregivers to make sure they're suited to making a fulltime, around-the-clock care commitment. And we assess potential clients (usually a family member), to see if at-home care seems like an appropiriate option. Once you're accepted into the program, we'll train you. You'll also be assignd a team of professionals to support, guide, and educate you about your family member's health issues or disabilities.

We weren't aware of this program when we were in the midst of our care-giving period. The program is a wholly-owned subsidiary of SeniorLink, Inc. of Boston. SeniorLink was formed in 2000; Caregiver Homes was launched in 2005, right in the middle of our care-giving cycle. The program appears to also be expanding into the Rhode Island area.

There are a few caveats for those who may try it:

  • Clients (the person receiving the service) must meet three base criteria (1. elderly or over 16 years old & disabled, 2. Needs help with either one or more activities of daily living (bathing, dressing, toileting, eating, transferring or walking) or require 24-hour care and supervision,
  • The care-giver cannot be the client's spouse, legal guardian, or the parent of a minor child.

Under those criteria, I actually could have qualified to be paid under the service - which would have helped us out enormously. I have no additional information about this service, however, so I urge anyone who has used it to let us know more in the comments.

The above is not meant to be a complete list of resources or even a "how-to" guide. It's only a start. It's a short list of resources for care-givers that, ideally, we'll add to and filter through participation in this diary, subsequent diaries by members and through comments by those who have additional information & direct experience to add.

I look forward to and welcome your feedback.






1 A single-payer option or Medicare-for-all would certainly be useful for the nation's people - and budget.

2 Yes, I did just use Wikipedia for the initial core reference. :)

3 Additional information can be found at the Agency for Healthcare Research and Quality website. The link takes you to the "Priority Populations" page.

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