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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.


 

Medicare

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.


 

Medicaid

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


NIHSeniorHealth


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 -- NIHSeniorHealth.gov and MedlinePlus.gov. 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


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.


 

________________

Footnotes

________________

 

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.

Originally posted to CareGiving Kos on Wed Jul 27, 2011 at 08:58 AM PDT.

Also republished by Surviving Alzheimers and Community Spotlight.

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Comment Preferences

  •  Please provide any information on services (40+ / 0-)

    that you're aware of for your own area, and include any state/federal information that may apply.

    If you're familiar with additional services and organizations at any level, whether in the diary itself or brought up in comments, please feel free to chime in - the more information we can collect, including feedback about the quality of services and any suggestions for what may be needed, the better we'll be able to inform care-givers and possibly shape future policy.

    Thank you.

    ...I've got to run for a bit, but I'll be back in a few hours to address any comments.

  •  caregiver homes (6+ / 0-)

    I wish somebody had told us more about that program back then...

    Certe, toto, sentio nos in kansate non iam adesse.

    by HawkWife on Wed Jul 27, 2011 at 09:07:03 AM PDT

  •  I have a suggestion on ways to help find caregiver (15+ / 0-)

    assistance - call the Alzheimer's Association for your area and ask to speak with a social worker. The social worker for the area should be knowledgeable about all of the various options that are available.

    If, for some reason, the social worker doesn't want to provide help because you are not caring for someone with Alzheimer's, ask for a reference for another social worker who would be able to help.

    If that idea doesn't work, you might be able to speak with a social worker at a local hospital who can provide you with information.

    I am emphasizing social workers because their job is to become knowledgeable about all of the options that are available for their area. They usually work with all of the various programs and organizations involved with caregiving, and are trained to ask questions to find out what is needed for each patient, and to help get each patient into the best situation. If you need to apply for assistance, they may well know what information is needed and what obstacles will need to be faced.

    Please note that I, myself, am not a social worker. But I have been married to one for over 30 years.

  •  "caregiver homes" (12+ / 0-)

    I'd never heard that phrase before, but two women have told me that they're being paid to take care of their parents here in Arkansas. I never asked more about it, but they had very low incomes, and their parents were elderly and needed the help. I don't know where the funding came from, but it sounds like a good thing to me.

    We lived without financial help for 11 years and finally got Hospice in the last month, as the strength in her legs began to fail. Since that time, though, her decline has been dramatic, and she's been at Hospice House since Friday. At 92, she can barely speak and is very weak, and I can no longer physically take care of her here (my grand plan for the end of her life).

    I suspect Medicaid would pay for a nursing home, but for just a bit less, she can stay at Hospice House ($150/day vs $175/day). With her severe "decline and debility," the local Hospice House is an excellent choice for us, because we don't want medical intervention to extend her life. Those who work at Hospice House understand that perfectly, and the volunteers are remarkable.

    Medicare would pay for Hospice House only for respite or if she had an acute illness, so I've sold the last of my parents' lifetime of investments and will have enough for three months. I hope she slips away by then, and I'm not going to worry beyond then. FWIW, the social worker told me long-term care insurance would pay for Hospice House. When the time is right, I' m going to look at that for myself as I have no family of my own.

    So Hospice House can be an excellent resource. We have many retirees in north central Arkansas, and I've often heard our Hospice program is the best in the state. The "House" is set up like a home, but with a receptionist and a nursing station. It's quiet and peaceful there, whereas a nursing home would be a more crowded, busy place. With her severe dementia, I think she be frightened there, it would be much harder on her.

    There's a fully equipped kitchen and a large "living room" with a computer and TV. The couch in her room can fold out, so I can stay there if I want. It's mostly decorated with butterflies, so long a symbol of metamorphosis. There's a lovely butterfly garden, and yesterday I rolled her out there in her geri-chair. We sat a spell and looked at the flowers and butterflies. She's always loved being out in nature, so that's a special bonus. They've made it lovely for patients and caregivers alike.

    We are fortunate to have the money, I know, but my parents worked hard for it and lived modestly, so this is a perfect use for it in my mind.

    Thanks for all the great information, GreyHawk, and all the best to you and others who post here.

    •  Thank you, cotterperson. n/t (3+ / 0-)
      Recommended by:
      cotterperson, Shadan7, Kitsap River
    •  If you happen to be in SW Florida (4+ / 0-)

      The Avow hospice care home in Naples is exemplary. My father-in-law was there for a month and a nicer set of caregivers and volunteers would be impossible to find.
      A huge caveat: while looking up the link, I find that they now charge through Medicare and Medicaid, the rest being charged on a sliding scale. This was not so a few years ago as it was supported by a trust fund and donations. Sadly enough, things have changed. I hope that the level of care has not changed likewise.

    •  that's wonderful! (4+ / 0-)

      We had quite the opposite experience -- when I mentioned "hospice" at my mother's NH, I honestly thought the staff was going to bound and gag me.  Their explanation was "well, why would you place her in hospice when we're doing the exact same thing they'd do?"

      Um, no, not exactly.  But try explaining that to them.  I did.  They got their wish in that yes, they intimidated me enough not to ask about it again.

      Certe, toto, sentio nos in kansate non iam adesse.

      by HawkWife on Wed Jul 27, 2011 at 02:11:10 PM PDT

      [ Parent ]

      •  I had the advantage (3+ / 0-)
        Recommended by:
        GreyHawk, Shadan7, Kitsap River

        of prior experience with Hospice. They helped my dad, my Vietnam veteran friend, and another close friend with cancer. You'd think I'd have just picked up the phone and called them, but I didn't!

        I started with the Area Agency on Aging, who had a family caregiver specialist. She'd worked for Hospice in two other states, and said my mom would have been accepted there. Then I called Hospice.

        Better late than never, I guess.

        PS

        Shame on them for using their medical-ness for intimidation!

  •  A note on Medicare's ESRD program (5+ / 0-)

    I request that you include something resembling the following information about Medicare and ESRD (End Stage Renal Disease):

    The information listed about Medicare's ESRD program, (I'm guessing) taken from information available from Medicare, is deceptive. While Medicare does cover dialysis, kidney transplant recipients who are less than 65 years of age after three successful years with their transplants will be kicked off Medicare until they reach 65 years of age or their transplants fail, whichever comes first. Medicare coverage continues for under-65 kidney transplant recipients for three years, as does Medicare Part B (this is correct, it's Part B that covers transplant meds, not Part D) coverage of transplant anti-rejection medications; both end after three years with a successful transplant, unless the recipient is otherwise considered disabled by the Social Security Administration.

    Dialysis patients who are under 65 and concerned about this may wish to consider nocturnal home hemodialysis six nights per week, which has been proven in several recent studies to be as good at clearing toxins from the blood as a transplanted kidney from a cadaver donor (though not as good as a transplant from a living donor).

    The above was written by me, not by Medicare, and is based on a) my own research into the subject, (b) information from other kidney patients and patient advocates, and (c) information received last week from my transplant team. I can provide cites, if desired, for the relevant studies in the second paragraph, most of which were done outside this country.

    Organ donors save multiple lives! A donor's kidney gave me my life back on 02/18/11; he lives on in me and in others. Please talk with your family about your wish to donate and sign up to give others the gift of life.

    by Kitsap River on Wed Jul 27, 2011 at 11:14:21 AM PDT

  •  seeking advice (5+ / 0-)

    I don't  have any answers to provide, but I do have a question.  Apologies if this is not the proper place to ask it, but this diary seems like it would be read by a group of people who might be able to provide some suggestions.

    I have an in-law in her late 60s/early 70s who has become increasingly home-bound by her own OCD/agoraphobia/fear of driving/depression.  

    A few years a go she was working, driving, etc. (albeit with occasional panic attacks, and medication for those) but since being laid off, her mental issues have become worse by the month.  

    She refuses to go to therapy, and completely refuses any anti-depressant-type medication (she tried one years ago and hated the way it made her feel, and is now convinced they will all do the same thing) which I think are probably the only things that could help her.

    Her husband still works, but their financial situation is dire, and he has become increasingly combative/verbally abusive as her mental state has worsened (like a wild animal who senses weakness and goes in for the kill... it's horrible). That is obviously compounding her problems, but she sees no way out due to finances.

    My big question is this... Are there mental health professionals who would come to her home for treatment?  And where could I find one who accepts medicare?  She's in S. CA.

    Any other ideas that I haven't even considered?
    Thanks!!

    "For coal to be 'clean,' it must magically float out of the ground" - RL Miller

    by Hopeful Skeptic on Wed Jul 27, 2011 at 02:13:32 PM PDT

  •  As a nurse practioner, may I offer an observation. (10+ / 0-)

    I continue to treat Medicaid patients in Illinois. I never turn anyone away.  This is a philosophical bias that I have.

    I no longer see primary care patients, since I have specialized in geriatric care in skilled nursing facilities.

    I can tell you that when I last treated general population outpatient Medicaid patients in a clinic setting, that I was very frustrated.

    First of all, it was virtually impossible to get a specialist to see a medicaid patient in the event that the patient was beyond my scope of practice.  Secondly, when I could not get a specialist to see my patient, my plan B that often entailed the prescription of more expensive antibiotic therapy was almost universally denied.  

    I expected a phone call from the pharmacist stating that Medicaid did not have in its formulary a particularly expensive antibiotic that was appropriate for my Medicaid patient.

    What is a provider to do?  May God bless my patients, and may God damn the corporate toadies who bias the system against those without money.

    "First they ignore you, then they laugh at you, then they fight you, then you win". Mohandas K. Ghandi

    by Randolph the red nosed reindeer on Wed Jul 27, 2011 at 04:04:22 PM PDT

  •  Caregiver Homes of Massachusetts (4+ / 0-)
    Recommended by:
    cotterperson, GreyHawk, HawkWife, Shadan7

    I'm in the process of applying for this. I've been my adult daughter's caregiver since 2002, but the program wasn't available then. An agency called Tri-Valley sent out a nurse & occupational therapist to interview us regarding my daily hands-on interaction with my daughter to decide how many hours of pay. The fact that she cannot be left alone because she has no ability to form memories anymore & can't remember her own physical limitations (no sense of balance, ataxia, seizures, uses wheelchair or walker) plays no part in the math. The agency has applied to the state for 23.75 hours per week. We're waiting to hear back from the state how many hours, if any, they decide to approve. What I really need is 21 hours to cover the time I'm at work & my daughter isn't in her day program to pay a caregiver. I don't earn quite as much per hour as the caregiver, but I need to work for the health insurance.

    My husband & I recently split up. (He's not her father) He used to watch her during these hours. I found a subsidized accessible apartment really quickly. If I can just get 21 hours covered by this program I'll have all the pieces in place for my new life.

    -7.88, -5.59 ...strange days indeed...

    by most peculiar mama on Wed Jul 27, 2011 at 04:54:37 PM PDT

  •  If you adopt a child (2+ / 0-)
    Recommended by:
    GreyHawk, Shadan7

    from the foster care system who has special needs, apply for an adoption subsidy even if you have enough money, because the subsidy comes with Medicaid, and you will need it.  I know one family that put the subsidy into a trust to pay for the care their child would need after they died.  

    I have lived in Massachusetts and Arizona since adopting my son, and his health care was excellent.  In many states, Medicaid covers mental health care better than private insurance - it certainly was true in both these states.

    Adoption subsidy is portable, but you have to reapply for Medicaid if you move to a new state, and make sure you have your award letter with you.

    A few years after moving here, just after moving to a new house, I spent one entire morning on the phone trying to find a support group for adoptive parents.  My son was banging in and out and the telephone was my lifeline.  After two or three hours I finally connected with a woman at the first agency I had called who was interested in starting such a group, and that fall we actually started one.  The moral of this story is don't give up.  

    Here is a link to my FAS diary's most recent version.  If you are dealing with someone with FAS, there are support groups in some places and some good sites online.

    When shit happens, you get fertilized.

    by ramara on Wed Jul 27, 2011 at 05:24:39 PM PDT

  •  Resources with a focus on kiddos but includes (3+ / 0-)
    Recommended by:
    GreyHawk, Moody Loner, Shadan7

    valuable info for all ages-especially the last two.

    Since its inception in 1965 (in tandem with Medicare), federal law has significantly expanded the scope of the Medicaid program over the past 46 years.

    There are over 51 highly distinct Medicaid programs that operate under common national guidelines but have been uniquely shaped by state decisions about who is eligible and the services that each state’s residents may receive.

    One of these programs is called the Katie Beckett Deeming Waiver or TEFRA.

    Established in 1982 under the Tax Equity and Fiscal Responsibility Act (P.L. 97-248), the Katie Beckett Medicaid Program (KB), permits the state to ignore family income for certain disabled children. It provides benefits to certain children 18 years of age or less who qualify as disabled individuals under §1614 of the Social Security Act and who live at home, rather than in an institution. These children must meet specific criteria to be covered. Qualification is not based on medical diagnosis; it is based on the institutional level of care the child requires. Title 42 Code of Federal Regulations outlines the criteria used to determine eligibility

    It is my understanding that states have the choice to opt into this program, so some states have not.  Fortunately, the state of Georgia did opt into this program, enabling individuals to receive the same health benefits offered by Medicaid but without regard to income criteria.

    Programs frequently overlooked

    EPSDT  (Early and Periodic Screening, Diagnosis and Treatment program).

    EPSDT is the result of a 1967 Amendment to Title XIX of the Social Security Act that directed attention to the importance of preventive health services for children. The goal of the program is to ensure health conditions and problems are detected and treated early, before they become more complex and costly.

    In 1989, Congress revised and strengthened the EPSDT program by mandating that states furnish all medically necessary services to individuals under the age of 21.  Not just for shots-see guidelines of everything covered-you would be stunned to realize how under utilized this program is.
    http://www.cms.gov/...

    The Tech Act
    In 1988, Congress passed the Technology-Related Assistance for Individuals with Disabilities Act, later referred to as the "Tech Act." The Tech Act was reauthorized in 1994 and again in 1998. In 1998, the Act was renamed the Assistive Technology Act. Today federal funding for the Act supports four major programs: 1) State Grant Programs, also known as Title I programs; 2) Alternative Financing Programs, often referred to as Title III programs; 3) Protection and Advocacy for Assistive Technology programs; and 4) national Technical Assistance programs. The Tech Act programs have been a major force in assisting people with disabilities and older Americans to live more productively and independently in their homes and communities and to participate fully in schools and workplaces throughout the U.S.
    https:/www.disability.gov...

    State Tech Act Grant Programs
    All 50 states, the District of Columbia, Puerto Rico and four territories have state grant projects. These projects conduct activities such as public awareness and outreach, information and referral, technical assistance and training to consumers, providers and policy makers, and systematic advocacy and collaboration designed to increase access to assistive and information technologies. The state Tech Act programs also use federal monies to leverage non-federal contributions that help the states further expand programs that provide assistive technology devices and services.
    For further info & what is available in your state:
    http://www.ataporg.org/...
    or
    http://nisat.info/...

    A valuable resource primer (pdf)

    “A Primer on How to Use Medicaid to Assist Persons Who are Homeless to Access Medical, Behavioral Health and Support Services"

     Do not be mislead by the title!  Extremely useful for an overview of history, programs, study & direction broken down into chapters.
     http://www.cms.gov/...

    •  Wow - excellent bit of research! (3+ / 0-)
      Recommended by:
      worldlotus, Moody Loner, Shadan7

      Thank you, worldlotus!

      •  Sigh, tis but a small bit that currently is (2+ / 0-)
        Recommended by:
        GreyHawk, Shadan7

        residing within multiple folders in my alternative brain-my pc.

        Once upon a time, prior to the wonderous internet, it was in paper form.  Boxes upon boxes of neatly filed info obtained via phone, letter, fax or in person from around the country.  

        You'd think it would be easier for beings now.  It has been my sad experience over the past 14 years alone that one is basically on their own within the many (sometimes overlapping) realms of caretaking or advocating for another with any form of medical special needs.  Beit educational, technological, medical, respite or funding needs.

        It is an extremely difficult path one finds themselves on & too often without sign posts or the time or understanding to ask or even look for sign posts.  

        So I advocate for others & I dissiminate info when ever possible.  Heh, typically in between my own caretaking responsibilities which means wee hours of the night...

  •  For Veterans and spouses of Vets (2+ / 0-)
    Recommended by:
    GreyHawk, Shadan7

    who served in wartime. An additional pension that can help make up a shortfall in income for care. My mother qualifies since Dad was in WWII but I haven't used it because Medicaid kicked in just in time.

    I think it's a good thing for those who care for these folks at home especially-a way to supplement the caregiver's income.

     http://www.veteranaid.org/

  •  Hospice (2+ / 0-)
    Recommended by:
    GreyHawk, Shadan7

    If a patient has a medical condition whose natural course will end their life within 6 months they are eligible for Hospice Care.

    Call the hospice's in your area.

    I'll drop back later if anyone has any questions. I volunteer for a hospice, but I don't have all the answers. . .

    Netroots Nation: Burning Man for Progressives

    by Gilmore on Wed Jul 27, 2011 at 08:00:49 PM PDT

  •  Please send me an invite (2+ / 0-)
    Recommended by:
    GreyHawk, Shadan7

    Thanks

    Netroots Nation: Burning Man for Progressives

    by Gilmore on Wed Jul 27, 2011 at 08:02:08 PM PDT

  •  Hospice Care (1+ / 0-)
    Recommended by:
    GreyHawk

    If the natural course of a disease will end the patients life within 6 onths they are generally eligible for Hospice Care. Doc has to certify this and patient has to agree to go into hospice program, but the cover LOTS of things that normally aren't covered. . .

    I volunteer for a hospice and have some, but not all the answers. . .  Will stop back or Kos-mail me if needed.

    Netroots Nation: Burning Man for Progressives

    by Gilmore on Wed Jul 27, 2011 at 08:12:14 PM PDT

    •  There are some other exceptions, too, (1+ / 0-)
      Recommended by:
      Shadan7

      as Shadan7 found out while caring for his mother-in-law.

      I don't know the details, but perhaps he'll have a chance to pop in and elaborate.

      •  Indeed (1+ / 0-)
        Recommended by:
        GreyHawk

        You don't have to be 65, but I think that you must have earned enough money in your lifetime to be qualified to receive Medicare when / if you reached the age to get .gov benefits for hospice care.

        Some hospice care is provided by not for profits, but most are for profit companies. I help a not for profit and don't think I would volunteer for a for profit. . .

        Netroots Nation: Burning Man for Progressives

        by Gilmore on Wed Jul 27, 2011 at 08:50:51 PM PDT

        [ Parent ]

  •  Some Resources I use in Washington state (2+ / 0-)
    Recommended by:
    GreyHawk, Shadan7

    I've been a fulltime caregiver for my wife who has Alzheimer's for around 10 years, most of that time the only caregiver.

    Our Area Agency on Aging in our county has a Respite Care program that I was able to access about 4 years ago.  Sliding scale on cost and for us there was no cost for 16 hours of respite care each month.  Sounds like a pitiful amount, but it was the first time off I'd had in years and really helped.

    As our assets reached Medicaid levels, she qualified for the C.O.P.E.S. program (sorry, don't remember the words that fit the acronym).  It pays for a caregiver after an assessment of needs.  In our case, I get an outside caregiver for 50 hours a month.  We actually qualify for 100 hours, but I've done it so long that I don't really want to be replaced that much as she nears the end.  It is possible to pay family through the program, although sadly for my case, it will not pay for a spouse to care for his wife.  They must not trust me after all these years.  Reality, though, is a fear of financial abuse by a spouse of convenience.  Whatever.

    We've been in Hospice for ten months.  Doesn't help much with the actual caregiving other than a bath aide a couple of days a week.  The support for me has been very important as has been having extra eyes seeing how things are going as we near the end.

    A biggie for me is that Medicaid pays for her diapers.  They're a big hit each month when you have next to no income.

    Thanks for writing your book, GreyHawk and Shadan7.  Just getting started, but I'm certainly shaking my head in agreement a lot.

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