Category Archives: Disabiity

Free Braille and Talking Book Program for Veterans

February 28, 2020

courtesy of NAELAeBulletin:

The Braille and Talking Book Program offers Veterans who have difficulty with regular print materials the return of the gift of reading.

Whether escaping into a great novel or staying current with popular magazines, the freedom and independence of reading are only a few steps away. This program, from the National Library Service (NLS) and the Library of Congress, provides talking books, audio magazines, and digital talking-book players free of charge.

Any honorably discharged Veteran who is blind, has low vision, or a disability preventing the reading of traditional materials is eligible. Participants choose whether their selected reading materials are delivered by mail, downloaded from the web-based service BARD (Braille and Audio Reading Download) or through the BARD mobile app for smartphones and tablets. NLS maintains a vast catalog of titles and publications from the latest best-sellers to timeless classics. Plus, Veterans have preferential status in the lending of materials and equipment.

The Braille and Talking Books Program is accomplished through a nationwide network of libraries to serve citizens and Veterans living inside the U.S. or abroad.  Applying for this service is easy. Call the National Library Service at 1-888-NLS-READ (1-888-657-7323) or visit them on the web at

Veterans served to protect freedom. Now let National Library Service provide the freedom for all to read.

Update: The Library of Congress published a Resources for Disabled Veterans guide.

Google Seeks Help From People With Down Syndrome

January 22, 2020

courtesy of NAELAeBulletin:

From Siri to Alexa, voice assistants are everywhere, but the technology tends to miss every third word that people with Down syndrome say. Now a new effort is underway to change that.

Google is partnering with the Canadian Down Syndrome Society to collect voice samples from adults with Down syndrome in order to program its algorithm to better decipher the unique speech patterns of this population.

Speech is often altered in those with Down syndrome due to variances in the facial skeletal and muscular systems, according to the Canadian Down Syndrome Society. However, in a small pilot, Google and the nonprofit group found that there were enough similarities across those with the chromosomal disorder to train the voice assistant technology.

“With the help of the Canadian Down Syndrome Society we were able to sample a small group to test whether there were enough patterns in the speech of people with Down syndrome for our algorithm to learn and adapt,” said Julie Cattiau, product manager at Google. “It’s exciting to see the success of that test and move into the next phase of collecting voice samples that represent the vocal diversity of the community. The more people who participate, the more likely Google will be able to eventually improve speech recognition for everyone.”

Participants in the Google effort known as Project Understood are asked to record themselves speaking 1,700 simple phrases like “strawberry jam is sweet.” The company will then use the data to improve its speech recognition models.

The Canadian Down Syndrome Society is hoping to solicit at least 500 voices. Given the increasing role of technology in everyday life, the Down syndrome group said the impact is likely to be significant.

“For most people, voice technology simply makes life a little easier,” said Laura LaChance of the Canadian Down Syndrome Society. “For people with Down syndrome, it has the potential for creating greater independence. From daily reminders to keeping in contact with loved ones and accessing directions, voice technology can help facilitate infinite access to tools and learnings that could lead to enriched lives.”

Project Understood is associated with Google’s Project Euphonia, a broad effort announced earlier this year to train computers to better understand and transcribe the words of those with speech impairments.

Ethical Issues in Representing a Client with Diminished Capacity

October 15, 2019

By Howard S. Krooks, Esq., CELA, CAP, Partner at Elder Law Associates PA
Attorneys often encounter working with clients who have declined physically and/or mentally, which is known in legal parlance as diminished capacity. However, the law assumes that every person has legal capacity unless and until a court has determined otherwise.

The American Bar Association Model Rules of Professional Conduct Rule 1.14 require an attorney when representing a client with diminished capacity to maintain a normal client-lawyer relationship as long as possible. The rules specify that in a “normal” client relationship, the attorney should be able to fully communicate with the client, the attorney should protect the client’s confidential communications and should allow the client to make core decisions about the representation.

Representing a client with diminished capacity puts the attorney into quite a predicament in procuring accurate information regarding the client’s legal problem. Generally, in order to maintain a normal lawyer-client relationship, the attorney must implement a three-stage interview process with the client to determine the legal problem in order to represent the client effectively. The process leads to one of four conclusions, from no evidence of diminished capacity to a lack of capacity and an inability to proceed with the representation.

While there is a difference between clinical capacity and legal capacity, there also are several different legal standards of diminished capacity, from Testamentary Capacity and Donative Capacity to Contractual Capacity. For example, a person may have the capacity to make decisions regarding certain simple things but lack capacity for other more complex matters.

Some believe it is inappropriate for attorneys to make capacity assessments. Yet, attorneys make capacity judgments daily, without formal training, including the initial determination of capacity as to whether clients can enter into the lawyer/client relationship. Throughout the representation, when signs present that capacity is questionable, the attorney must make deliberate efforts to assess capacity. Subsequent assessments of capacity beyond the initial assessment may be needed as capacity is fluid. The bottom line is that capacity assessments by lawyers are unavoidable.

When making an assessment, the attorney must always presume capacity. The attorney may seek guidance from an appropriate diagnostician in determining the extent of a client’s diminished capacity but should obtain client consent before any screening tests are performed. If a person is unable to consent, a legally authorized surrogate could make this decision. If necessary, an attorney can bring protective action if it’s reasonably believed that a client has diminished capacity and is at risk of substantial physical, financial or other harm, and in appropriate cases, seek the appointment of a guardian.

It’s something attorneys face all the time: working with clients who have declined physically and/or mentally. In the elder law world, this is known as diminished capacity. However, there is a big difference between the legal definition of diminished capacity and the clinical definition of diminished capacity.

Much of the clinical testing done on people to determine if diminished capacity exists deals with their inability to perform activities of daily living (ADL). For example, a doctor may test if the person can count backward from 20 to 1, if he or she can remember what year it is or who the president of the United States is, and test physical acuity, such as tying shoes, sitting/standing, walking, etc.

What attorneys need to be concerned with most though is their client’s executive function. Is the client able to make decisions regarding his or her legal matter and/or estate planning, financial future, living arrangements, welfare of their spouse/family, etc.? Consider this scenario: You’re meeting with a client to discuss case strategy and you notice he repeats himself two or three times in the same conversation, forgets what he had for lunch that day but still fully understands who you are, what you’re doing and what the conversation is about, and is fully capable of making decisions about his legal representation. Now, fast forward six months, and you’re having the exact same discussion with the client about changing the legal strategy, yet the client can’t understand what you’re talking about or make the same types of decisions. His decline is definitely noticeable, but he has not been declared legally incapacitated.

On the legal side, the law assumes that every person has legal capacity unless and until a court has determined that he or she lacks capacity. I can’t tell you how many people probably are lacking in capacity in the clinical sense and in the legal sense, but they don’t have guardians appointed for them simply because they haven’t been brought to court. In the eyes of the law, these people are still assumed or presumed to have capacity.

From the attorney’s perspective, you may very well be dealing with someone that has not been adjudicated to lack capacity, but that doesn’t mean they have it, just that it hasn’t been adjudicated. So, what can you do about it?

Rules Pertaining to Lawyers Representing Clients
with Diminished Capacity

The American Bar Association Model Rules of Professional Conduct Rule 1.14* requires an attorney when representing a client with diminished capacity to maintain a normal client-lawyer relationship as long and as far as reasonably possible. The rule recognizes that the attorney’s position is an “unavoidably difficult one.” It specifies that in a “normal” client relationship, the attorney should be able to fully communicate with the client, the attorney should protect the client’s confidential communications and should allow the client to make core decisions about the representation.

Through the “Duty of Communication,” the rule requires an attorney to explain a matter to the extent reasonably necessary to permit the client to make informed decisions regarding the representation. The rule recognizes that communications may be adjusted:

  • to the representation;
  • to the comprehension and needs of the client; and
  • even allowing for delaying transmission of information, if the delay is not to serve the lawyer’s own interest or convenience or the interests or convenience of another person.

“Confidentiality” is a core value of the client/lawyer relationship. All information relating to the representation is confidential, including any observations made by the attorney regarding a client’s capacity. Confidentiality remains vital even when the client has diminished capacity. An attorney must maintain client confidentiality even from concerned family members, unless the client has consented to disclosure or if there is a need for protective action (see below).

Representing a client with diminished capacity puts the attorney into quite a predicament in procuring accurate information from the client regarding the client’s legal problem. So, how does the attorney effectively determine the client’s objective and legal needs where the client has diminished capacity?

Generally, in order to maintain a normal lawyer-client relationship, the attorney must implement a three-stage interview process with the client to determine the legal problem in order to represent the client effectively.

The first step the attorney takes is Preliminary Problem Identification, where the lawyer asks the client open-ended questions. The attorney allows the client to relay the legal problem and the relief he or she seeks in a way that is most comfortable for the client.

Next, the lawyer conducts a Chronological Overview, where the lawyer asks the client to relay the legal problem in a systematic successive manner, beginning when the legal problem was first created to the present.

Finally, the attorney determines the possible causes of action or a planning strategy applicable to the client’s case in the Theory Development and Verification step.

The process of determining the legal problem in order to represent the client effectively leads to one of four conclusions:

  1. There is minimal to no evidence of diminished capacity, in which case the representation can proceed.
  2. There are some mild capacity concerns, but they are not substantial, in which case the representation can proceed.
  3. Capacity concerns are more than mild or substantial, and professional consultation or formal assessment of capacity may be merited. In this case, only if the client is determined to have capacity by a professional may the representation proceed.
  4. The capacity to proceed with the requested representation is lacking, in which case the representation may not proceed.

Legal Standards of Diminished Capacity

Earlier, I referred to the difference between clinical capacity and legal capacity. A further analysis is required with respect to legal capacity standards. According to the law, there are several legal standards of diminished capacity:

The first type of capacity is Testamentary Capacity. This means that at the time of executing a will, the testator (client) must have the capacity to know the natural objects of his/her bounty. In other words, the testator must understand the nature and extent of his/her property and interrelate those elements sufficiently to make a disposition of property according to a rational plan. This does not mean the testator must be capable of managing all of his or her affairs day to day. The testator also doesn’t have to have capacity consistently through time (i.e., the testator can sign his or her will at a lucid interval and lack capacity immediately before and/or after). Testamentary capacity is considered the lowest level of capacity a person must have in order to make a valid will.

The next type of capacity is called Donative Capacity, where the testator has the capacity to make gifts. This requires an understanding of the nature and purpose of the gift, including an understanding of the nature and extent of the property to be given, a knowledge of the natural objects of the donor’s bounty, and an understanding of the nature and effect of the gift. Some states require a higher standard for donative capacity than testamentary capacity.

A third type of capacity is Contractual Capacity, where the courts assess the person’s ability to understand the nature and effect of the act and the business being transacted. Contractual capacity is requires a higher level of capacity than testamentary capacity. If the transaction is highly complicated, a higher level of understanding may be needed versus something simple. Minors by definition have no legal capacity to contract and such contracts are generally voidable by the person who lacked capacity.

Other standards of capacity include the capacity to convey real property, the capacity to execute a Durable Power of Attorney and decisional capacity with the respect to a client’s health care.

The Attorney’s Role

What is the attorney looking for in determining if capacity exists? Possible cognitive signs of incapacity include:

  • Short-term memory loss
    • Quickly forgetting information just discussed
    • Repeating the same statements
    • Asking the same questions multiple times
    • Difficulty describing recent events
    • Inability to discuss sports or weather (“small talk”)
  • Communication Problems
    • I brought my “thing” with the papers in it (i.e., notebook)
    • Defers to others excessively (“My wife handles all my appointments; you’d have to ask her.)
    • Difficulty staying on topic
    • Difficulty finding words
  • Comprehension Problems
    • Difficulty repeating back or paraphrasing simple concepts
  • Calculation Problems
    • Difficulty with simple math
    • Adding dollar amounts
    • Inability to line up columns when adding
    • Lack of awareness of financial assets
  • Disorientation
    • Relative to time, space, or location
    • Difficulty navigating attorney’s office building spatially
    • Getting lost driving to the office
    • Knowing what time it is
    • Knowing what year it is
  • Significant Emotional Distress
    • Client appears extremely anxious, tearful, or depressed.
  • Emotional Inappropriateness
    • Extremely wide range of emotions (moving quickly from laughter to tears)
    • Expresses feelings that seem highly inconsistent with what he or she is discussing (e.g., laughter when discussing death)
  • Delusions
    • Belief that neighbor or government is spying on them
    • Belief that food is poisoned for assisted living facility or nursing home residents
  • Hallucinations
    • Hearing voices nobody else can hear
    • Having a conversation with another person who is not there
  • Poor Grooming/Hygiene
    • No brushing of hair
    • No shaving
    • No regular bathing/showering
    • Wearing multiple layers of clothing

There are some who suggest that it is inappropriate for an attorney to make a capacity assessment. Yet, the attorney makes capacity judgments daily, without formal training, including the initial determination of capacity as to whether the client can enter into the lawyer/client relationship. Throughout the representation, when signs present that capacity is questionable, the attorney must make deliberate efforts to assess capacity. Subsequent assessments of capacity beyond the initial assessment may be needed as capacity is fluid. The bottom line is that capacity assessments by lawyers are unavoidable.

The following questions will arise for the lawyer in assessing capacity: When does a lawyer rely on his or her own instincts? When should a lawyer refer the client to another professional for assessment?

Does the Lawyer Have Authority to
Refer a Client for Assessment?

First and foremost, the attorney must always presume capacity. For an assessment to take place, the concerned parties must overcome the presumption by exhibiting evidence of impaired decision-making.

According to the ABA Model Rules of Professional Conduct Rule 1.14, Comment 6, the “lawyer may seek guidance from an appropriate diagnostician” in determining the extent of the client’s diminished capacity.

The lawyer should obtain client consent for any assessments or screening tests performed or for referrals to other professionals for testing. Client consent is crucial. Even clients with diminished capacity may still consent to being screened. If a person is unable to consent, then consider whether there is a legally authorized surrogate who can make this decision, either someone named by the client as Durable Power of Attorney or a Health Care Surrogate.

The Restatement (Third) of the “Law Governing Lawyers,” Comment d. to Section 24, states where practicable and reasonably available, independent professional evaluation of the client’s capacity may be sought. A referral to a physician for a medical exam can help rule out if the client is being overmedicated or taking a toxic combination of medications that could affect capacity. A medical exam can also uncover issues such as a poor diet, vitamin deficiencies, depression, infectious diseases, head trauma, poor eyesight and other treatable conditions.

Diagnosticians may include psychiatrists, psychologists, gerontologists and other health professionals who can perform professional evaluations. A doctor’s letter detailing the capacity assessment can be very helpful, especially in potentially conflicted cases, in helping the attorney determine if a client has capacity.

If an agent under a power of attorney or other legal representative has been appointed for the client, the attorney may look to the representative for decisions on behalf of the client, according to the ABA Model Rules of Professional Conduct Rule 1.14, Comment 4. In addition, the attorney can consult with family members. According to Model Rule 1.14, Comment 3, “The lawyer may wish to have family members or other persons participate in discussions with the lawyer.”

Can the Lawyer Bring Protective Action?

The quick answer to this question is yes.

According to Model Rule 1.14(b): “When the lawyer reasonably believes that the client has diminished capacity, is at risk of substantial physical, financial or other harm unless action is taken, and cannot adequately act in the client’s own interest, the lawyer may take reasonably necessary protective action, including consulting with individuals or entities that have the ability to take action to protect the client and, in appropriate cases, seeking the appointment of a guardian ad litem, conservator, or guardian.”

For an attorney to bring protective action for a client, the requirements include:

  • Existence of diminished capacity;
  • A risk of substantial harm;
  • An inability to act adequately in one’s own interest.

When taking protective action for a client, the lawyer is impliedly authorized to reveal information about the client, but only to the extent reasonably necessary to protect the client’s interests (see Model Rule 1.14(c)).

The Importance of Knowing a Person’s
Habitual Behavior and Values

Consider the following example:

“The doctors wondered, was she uncooperative, cantankerous, and obstinate because her memory and mental function were impaired, or was she a woman who had spent a long lifetime being uncooperative, cantankerous, and obstinate?”

The woman’s daughter was able to say that her mom had always been obstinate, but being uncooperative and cantankerous were new characteristics, more than likely associated with her injury. The main point of this is that a person does not lack capacity merely because he or she does things that other people find disagreeable or difficult to understand.

A great danger in capacity assessment is that a client’s eccentricities, aberrant character traits, or risk-taking will be confused with incapacity.

Lawyers should take the following mitigating factors into account when assessing a client’s capacity: stress, grief, depression, reversible medical conditions, hearing or vision loss and the client’s educational, socio-economic or cultural backgrounds.

When assessing a client’s capacity, the attorney should attempt to optimize capacity by taking a few reasonable steps. The attorney should always attempt to interview the client alone. However, sometimes, family, friends or caretakers can play an important role in providing essential background information relevant to the work to be done. Attorneys should adjust the interview environment to enhance communication. Impaired vision or hearing often produces non-responsive behaviors that may be wrongly interpreted as a lack of mental incapacity. Consider these steps to optimize the assessment interview:

  • Speak slowly and conduct the interview in a quiet, well-lit area.
  • Arrange the furniture in the room, so as to avoid glare from overhead lights or windows.
  • Provide necessary audio or visual amplification to facilitate communication and functioning.
  • Be patient. Some elder clients need extra time to process the information regarding decisions at hand.
  • Meet with the client more than once to acquire a truer sense of the person’s decision-making capacity.
  • Inaccurate sessions due to fatigue may be avoided by scheduling shorter sessions at times when the client tends to be most alert.
  • Home visits are especially conducive to optimal decision-making for many clients.

Once the above steps have been performed, consider a standardized screening or mini-mental status evaluation where the client should respond to the following requests:

  • Delayed recall of three items;
  • Repeating a linguistically difficult phrase;
  • Following a three-step command;
  • Writing a sentence;
  • Copying a two-dimensional figure;
  • Performing serial threes;
  • Spelling the word “world” backwards.

The danger in doing a mini-evaluation like this is that the results provide only a crude global assessment of cognitive functioning. A poor score does not rule out the client’s ability to perform some decision-making tasks. Further evaluations or additional and/or repeated evaluations may be necessary.

You can find out more information about assessing adults with diminished capacity in the following resources: ABA Comm. On L. & Aging & American Psychological Association, Assessment of Older Adults with Diminished Capacity: A Handbook for Lawyers (2005); National Academy of Elder Law Attorneys, Aspirational Standards for the Practice of Elder and Special Needs Law with Commentaries, (Second Edition, April 24, 2017).

If you have any questions about diminished capacity, you can visit our website at or email me at


Practical Tip 1:
Capacity is ever changing. It can ebb and flow, so you have to go with the flow. An attorney must be willing to meet the client where and when she or he is most lucid.
Practical Tip 2:
Remember that sometimes our client’s diminished capacity might be more of a reflection of our incompetency in adjusting to the emotional, physical and physiological needs of the client. We have an ethical obligation to presume and enhance a client’s capacity.
Practical Tip 3:
Be aware of distractions that may be around your office that would affect the client’s capacity, such as outside noise, a view of the plaza/sidewalk outside your office or with people walking by, glare, and difficulty for the client to hear or see you.
Practical Tip 4:
Representing clients with diminished capacity requires more time to explain matters fully. A series of shorter, more focused meetings may be necessary.
Practical Tip 5: 
Plan ahead for incapacity by asking permission and receiving consent to speak to others if the client’s capacity comes into question.
Practical Tip 6:
Listen intently to the client and follow up before jumping to conclusions. The attorney must assume capacity, so if the client says something that seems to indicate incapacity, follow up with questions to clarify what the client meant. Do not jump to the conclusion that what they are saying is inappropriate or evidence that the client has become incapacitated.
Practical Tip 7:
Watch for indications from one meeting to the next that the client is declining. The attorney should always be observant of declining hygiene or physical deterioration.
Practical Tip 8:
The attorney should attempt to meet in private with the client. If the client wishes to have other people present, the attorney must talk directly to the client and not be distracted by the other people. Although it is sometimes a challenge, the attorney must insist that it is the client who speaks and not someone else speaking for the client.
Practical Tip 9:
The attorney should sit facing the client so that the client may be able to obtain visual clues as well as the words themselves.
Practical Tip 10:
Respect and dignity: These are key in working with clients with diminished capacity.

Source: Roberta K. Flowers, Maintaining a “Normal Relationship” with Clients with Diminished Capacity, NAELA News, Spring 2015

Howard S. Krooks, Esq., CELA, CAP is a Partner at Elder Law Associates PA, with its headquarters located at 7284 W. Palmetto Park Road, Boca Raton, Florida 33433, and additional locations in Aventura, West Palm Beach and Weston, Florida. He is also Of Counsel at Amoruso & Amoruso LLP in Rye Brook, New York. For more information about Howard S. Krooks or Elder Law Associates PA, please visit

*ABA Model Rules of Professional Conduct Rule 1.14: Client with Diminished Capacity
Client-Lawyer Relationship
(a) When a client’s capacity to make adequately considered decisions in connection with a representation is diminished, whether because of minority, mental impairment or for some other reason, the lawyer shall, as far as reasonably possible, maintain a normal client-lawyer relationship with the client.(b) When the lawyer reasonably believes that the client has diminished capacity, is at risk of substantial physical, financial or other harm unless action is taken and cannot adequately act in the client’s own interest, the lawyer may take reasonably necessary protective action, including consulting with individuals or entities that have the ability to take action to protect the client and, in appropriate cases, seeking the appointment of a guardian ad litem, conservator or guardian.

(c) Information relating to the representation of a client with diminished capacity is protected by Rule 1.6. When taking protective action pursuant to paragraph (b), the lawyer is impliedly authorized under Rule 1.6(a) to reveal information about the client, but only to the extent reasonably necessary to protect the client’s interests.

House Calls Provide Better Care and Save Money. Why Don’t More Use Them?

October 8, 2019

Only a fraction of older adults eligible for home-based primary care are being served
By  Beth Baker  September 13, 2019

Margaret Birt, then 62, had routine surgery in 2006. But in the recovery room, she had complete cardiac arrest. Initially in a vegetative state, Birt regained much of her cognition. Her life, however, was never the same. She was left with no physical capabilities, needing constant care.

Rather than ending up in a nursing home, though, Birt lives at home in Wheaton, Ill. with her husband, Maurice. She receives primary medical care there, covered by Medicare, from Dr. Thomas Cornwell and his team at Northwestern HomeCare Physicians. They perform exams, chest x-rays and blood draws — all in the comfort of Birt’s home. “We’re very fortunate,” says her husband. Cornwell is also CEO of the Home Centered Care Institute, dedicated to mentoring and training home-based providers.

In addition to her Medicare-covered primary care, Margaret Birt requires 24-hour help from caregivers that the couple must pay for out-of-pocket. Without the generous long-term care policy purchased years ago, Maurice Birt says, he would be bankrupt.

House Calls: A Cost-Saving Measure

“Home-based primary care focuses first on a vulnerable and disenfranchised population, often older adults with multiple chronic conditions who also experience problems with basic activities of daily living [such as walking or dressing],” says Dr. Bruce Leff, director of The Center for Transformative Geriatric Research at Johns Hopkins University School of Medicine. “They are what payers refer to as ‘high need, high cost.’”

Prior to January 1, 2019, health providers had to document the medical necessity for why a house call was needed instead of an office visit. Medicare has since eliminated this requirement. Now it is at the provider’s discretion where a patient is seen, explains Cornwell.

“The main difference is house calls could not be done prior to this year for the convenience of patients who could easily get to the office. Now they can. Having said this, most house call programs have as their mission to serve patients who otherwise cannot get to a provider’s office,” notes Cornwell.

It may seem counter-intuitive, but giving these vulnerable patients individualized primary care at home saves money for the nation’s health care system, according to studies by Department of Veterans Affairs and the Centers for Medicare and Medicaid Services (CMS), among others.

“Now there is strong evidence that home-based care results in better care outcomes and better experience of care by patients and by caregivers, who often have a lot put upon them,” says Leff, who is working with colleagues to develop quality standards for home-based primary care. “It also has a pretty robust effect on reducing health care costs.”

The John A. Hartford Foundation (a Next Avenue funder) awarded Leff and colleague Dr. Christine Ritchie, in partnership with the Home Centered Care Institute and the American Academy of Home Care Medicine, a $1.5 million grant to foster and expand home-based primary care.

“What we’re focusing on is a population who is really in need,” says Brent Feorene, executive director of the American Academy of Home Care Medicine. “Even if the adult son could get mom to the doctor’s office, the average primary care practice is not equipped to handle the patients. The doctors don’t have time, and often [the patients] have psychosocial issues.”

Patients with dementia may experience fear and anxiety at a doctor’s office, for example, and be disruptive to others in the waiting room.

At least 2 million older adults would benefit from home-based primary care, according to Health Affairs. Because these patients have difficulty getting to an office visit, they frequently end up in emergency rooms or hospitals. Per-patient savings range from $1,000 to $4,000 annually through reduced hospital and nursing home stays, emergency room trips and specialist visits, according to research cited by the American Academy of Home Care Medicine.

According to the American Academy of Home Care Medicine, the CMS Independence at Home Demonstration, part of the Affordable Care Act, estimated that Medicare would save $10 to $15 billion total over a 10-year period if home-based primary care were extended nationally to those on Medicare who are homebound.

Benefits to Patients and Families

For patients with chronic conditions, in addition to the convenience of home-based primary care, “The biggest benefit is that the care is very well coordinated,” says Dr. Zia Agha, chief medical officer of West Health, a research and policy center focused on improving care delivery to older adults.

“You have a team of providers who are working together to provide services to you. There is a tremendous emphasis on delivering palliative care. We see a lot of these patients where mom used to be in the ER or hospital ten times a year, and now she has not had a single hospital admission,” says Agha. “That is the biggest advantage, to be helped at home and have the right care to allow them to have quality of life, and not be on aggressive medical services.”

Geriatrician Dr. Carla Perissinotto, medical director of UCSF Care at Home at the University of California, San Francisco, stresses that home-based primary care is person-centered by definition. “When you are in someone’s home, you [as the doctor] are not the center, it is the person,” she says. “It is on their territory. You have to be comfortable with a change in the dynamic.”

For example, she says, “In the clinician’s office, you very clearly know as a patient where you’re supposed to sit. When I go into someone’s home, I wait for them to tell me where to sit.”

She recently had a medical resident ask her what to do about a patient who was stuck in the hospital and becoming increasingly delirious, begging to go home. The hospital did not want to keep him and no nursing home would take him.

“I said, ‘Has anyone thought of taking him home?’” says Perissonotto. “’I can see him at home, we can get home physical therapy. Has anyone applied for in-home support services?’” Two days later, he was back at home where he and his wife have lived happily for 18 months.

“We’re spending billions and no one has asked, what are the barriers to being at home? That’s not rocket science,” Perissinotto says.

“I see this is mostly a high-touch field. But in order to provide quality care, you have to have high-tech capability,” Cornwell adds. “With my smartphone, I can do an EKG within a minute. We have x-ray services, lab services, ultrasound in the home to check things like blood clots in the legs or abdominal pain. I can have more done in the home with smart technology than most can do in the office. It’s having the technology that enables truly quality care.”

Obstacles to Expanding At-Home Care

Despite the growing evidence that home-based primary care is superior in terms of cost and quality for those with complex needs, only a fraction of eligible older adults are being served.

Huge swaths of the country have no home-based primary care, especially in rural areas in Idaho, Montana, the Dakotas and other states.

Most people who are homebound live at least 30 miles from a home-based practitioner. Experts point to two major obstacles: reimbursement and lack of physicians.

Providers of primary care at home, including physicians, nurse practitioners and physician assistants, see roughly six to 10 patients a day, compared to office-based physicians who see up to 25. Providers receive a modest amount more per house call (Medicare pays $10 to $30 extra), which usually does not cover the time spent driving or coordinating the care of these complex patients. In the traditional payment model, this has meant much lower salaries for home-based practitioners (unless they are subsidized by a health system), making it hard to attract doctors to the field.

But that is changing. The fee-for-service model is giving way to value-based payments, a flat-fee per patient for primary care, including home-based. Here, high-quality care is incentivized and more complex cases receive higher reimbursement. In January 2020, providers in 26 regions may voluntarily opt for this method of payment. Medicare also recently eased some of the record-keeping burdens on physicians making house calls by not requiring them to justify every home visit.

Beyond the reimbursement challenges, many doctors barely know of the field’s existence. Residency programs often do not require rotations in home-based medicine or even in geriatrics.

“When I say I’m a geriatrician, I don’t get ‘Wow, you must be brilliant’ like I would if I said ‘I’m a neurosurgeon,’” says Perissinotto. “A lot of it is how we as a society value older adults. And it’s exposure. We have to explain it’s very challenging work and it’s amazing.”

“If you’re going into medicine not with a procedural focus [such as surgery], but to have a relationship with the patient for many years, you find a home in home-care medicine,” says Feorene. “You’re seeing the patient’s surroundings, you get to know the elder’s story. We’re often there in the last three years of life, and we’re making a difference in that final chapter. For those providers looking for a Marcus Welby relationship with the patients, this delivers in spades.”

The field is growing. Feorene’s organization, the American Academy of Home Care Medicine, has 900 members, half of them physicians, one-quarter nurse practitioners and physician assistants and the rest being social workers and nurses.

Nurse practitioners are “flocking to the field,” he says.

To spread the word and develop best practices, the Home Centered Care Institute in 2017 created a national network of Centers of Excellence that includes the Cleveland Clinic, University of California, San Francisco and four others.

Cornwell urges consumers to ask their physicians and health systems to support home-based primary care and the new value-based payment programs.

“It would be wonderful to have a groundswell,” he says.

Agency did not conduct required oversight of program for those with disabilities

October 7, 2019

courtesy of NAELA eBulletin:
The Washington Post

August 14

Health and Human Services officials have failed to conduct required visits of independent living programs for thousands of people with intellectual and physical disabilities, the agency’s Office of the Inspector General found.

The Administration for Community Living, created within HHS in 2012, administers two independent living programs, which aim to help people with disabilities find housing services, job opportunities and other resources. By law, ACL must carry out compliance reviews of at least 15 percent of the programs that receive federal funding and in at least one-third of the states that receive the funding. The inspector general found ACL has not conducted such visits since it assumed oversight of the programs five years ago.

ACL said it could not conduct the reviews because of limited funds for travel. The office is given a set amount of funding to administer grants to independent living programs and monitor them, but OIG determined it did not set aside enough money to conduct its oversight activities.

“The problem is that these organizations, they’re not large. They’re serving beneficiaries that need a lot of services,” said Mike Barton, assistant regional inspector general for audit services. “These on-site visits would help to ensure the services are being provided, but it’s not being done.”

ACL contends it provides proper oversight through a program it piloted that monitors compliance activities, outcomes, fiscal operations and reports from the programs’ operations.

But disability advocates maintain that visits are critical to ensure the programs are not only operating most effectively, but adequately serving a diverse set of beneficiaries who rely on the services to live independently.

“You have to make sure that independent living programs are serving the full breadth of the disability community,” said Nicole Jorwic, senior director of public policy for the Arc, which advocates for people with intellectual and developmental disabilities.

OIG conducted its audit after receiving a hotline tip that ACL was not carrying out its oversight.

“Because current technology enables ACL to thoroughly review most program components, on-site reviews can be reserved for more complex situations or concerns that require physical inspection,” an ACL spokesperson said in a statement. “This cost-effective approach to monitoring allows us to focus resources on services that directly support people with disabilities.”