Under the current military retirement system, a retired member of the military can elect to fund a Survivor Benefit Plan (SBP) that will pay the retirees survivors a monthly payment to help make up for the loss of retirement income. When the retiree dies, the SBP will pay up to 55 percent of his pension to his wife or children. But if a child with special needs receives the pension payment, she could lose other important government benefits like Supplemental Security Income or Medicaid because the income from the pension is counted as the child’s for purposes of calculating her eligibility for those other government benefits. Unfortunately for the child, as the law stands now, SBP payments cannot be assigned to a special needs trust that would protect both the pension payment and the child’s other assistance.

Virginia congressman Jim Moran (D) introduced H.R. 4329, also known as the Disabled Military Child Protection Act of 2012, to protect children of deceased members of the military who might face a loss of other government benefits if they receive payments from an SBP. Under the proposed law, military retirees could name a special needs trust as the beneficiary of an SBP instead of naming a child directly or skipping her altogether. Rep. Moran explained that “[t]he health of our special needs military children should not suffer due to this loophole in the military retirement system. When health care costs for disabled kids can top $100,000 a year, the military needs to give parents the opportunity to plan for their special needs children’s future.

1.   Have realistic expectations.

It is important to have realistic expectations about the nursing home environment and the amount of care your loved one will receive.  Although nursing home care (also known as skilled nursing facility care) is often referred to as “24-hour” care, it rarely means one-to-one care, 24 hours a day.  Certified Nursing Assistants (CNAs) will typically each need to care for eight to fourteen residents during a shift.  In addition, their extra duties required during meals and at change-of-shifts usually make staff even less available to help your loved one during those times.

Physicians do not make routine daily or even weekly visits to the nursing home and rarely have a set time to visit the facility, often making visits late in the evening or on the weekends after their general practice offices are closed.  However, the facility’s nurses are in constant communication with the patient’s physician by phone, reporting on the patient’s status, lab and test results and changes in condition.   If you need to speak to your loved one’s physician, ask the facility’s nurse to have him or her contact you.

2. Understand the purpose and extent of the care.

Some residents and family members believe that the nursing home staff should be personal attendants to the residents and do everything for them.  This is counterproductive to the goal of rehabilitation, which requires that each resident be encouraged to do as much as possible independently.    However, although independence is vital to self-esteem and crucial to meeting rehabilitation goals, safety is always a paramount concern.  Therefore, for example, if your loved one is at risk of falling, it will be important that that he or she not try to get up out of bed without the assistance of facility staff.

3. Important tips upon admission

 It is very important that you provide the facility with a copy of all of your loved one’s legal documents that relate to his or her wishes regarding health and personal care and that designate an agent for such care.  These documents include, but may not be limited to, an Advance Health Care Directive, Physician’s Order for Life Sustaining Treatment (POLST), Durable Power of Attorney for Health Care, and/or Conservatorship papers.

 The facility does not have the time to communicate information regarding your loved one’s care to multiple family members.  Therefore, it is important that one person be assigned as the “responsible party” to communicate with the facility.   If your loved one has executed an Advance Directive for Health Care or a Durable Power of Attorney for Health Care, the responsible party should be the person named as your loved one’s primary agent under that document.  If the primary agent consents to a different person being the contact person for the facility, the agent should nevertheless stay informed and available (at least by telephone) in case an emergency arises requiring the agent to make a medical decision.   The agent (or other contact person) should communicate any news regarding your loved one’s care to the other family members.

Do not bring valuable personal property to the nursing home as it may disappear for a variety of reasons, including getting misplaced, being taken by a confused resident, going down the drain in the shower, etc.  Also, label with your loved one’s name all of his or her personal items that will be needed while in the facility, including eyeglasses, dentures, and hearing aids.   Your loved one’s clothing should all be washable and not require ironing.  Document ALL of your loved one’s items that are brought to the facility on the facility’s inventory list and update the list when new items are brought in or items are taken home.

4. Know the Medicare rules.

Medicare will pay for a limited amount of care in a skilled nursing facility provided that certain qualifications are met.  In order to receive ANY coverage by Medicare, the patient must be admitted to the skilled nursing facility within 30 days following a qualifying minimum 3-consecutive-day inpatient hospital stay.  Qualifying days do not include any days in the hospital merely for observation or while in the emergency room. There have been cases where a patient has stayed in the hospital for a week or more without being officially admitted, so the hospital stay did not qualify the patient for Medicare coverage in a nursing home. The care in the skilled nursing facility must be for the SAME condition treated during the hospital stay and be needed for medical or rehabilitation purposes.

In almost all cases, Medicare will only continue to pay for care in the skilled nursing facility provided the patient is making progress and the potential exists for additional improvement.  As long as the above conditions continue, Medicare will assume full financial responsibility for the patient’s care in the skilled nursing facility for up to 20 days.  If progress is still being made and it is deemed medically appropriate to continue with the care plan past day 20, Medicare will continue to cover PART of the cost of the patient’s care from day 21 up to day 100.  The balance of the patient’s cost of care during these 80 days will be a co-payment charged to the patient or to the patient’s supplemental insurance carrier, if any.

However, there is NO GUARANTEE that Medicare will pay for the entire 100 days of care.  In fact, patients rarely qualify to receive all 100 days of coverage under Medicare.  Usually, as soon as the patient stops showing progress, no matter how many days of care they potentially have left, Medicare will discontinue coverage.  If you disagree with the determination and believe that your loved one can still benefit from further therapy and that the care is still medically appropriate, even if only to maintain, rather than improve, his or her level of functioning, you may appeal the Medicare determination by calling  (800) 841-1602. You can also find information on how to appeal from the Center for Medicare Advocacy at www.medicareadvocacy.org.  However, if your appeal is denied, the patient will be completely financially responsible for the cost of the care from the date Medicare stopped coverage.  Also, supplemental insurance coverage will normally not cover any time after Medicare coverage stops.

5. Meet with the nursing home staff.

It’s important to be familiar with the Executive Director or Administrator, Director of Nursing (DON), Social Services Director, Head of Dietary Services, rehabilitation therapists, and nurses responsible for your loved one in the nursing home.  Know what their roles and responsibilities are in relation to your loved one’s care, and by all means, inform them of any special issues pertaining to your loved one.

 6. Get to know the Certified Nursing Assistants (CNAs).

CNAs provide most of the care to residents.  Be courteous to them but be clear about anything your loved one needs.  The better the relationship you establish with the particular CNAs caring for your loved one, the easier it will be to talk with them.

7. Understand dietary precautions.

 Always, always check with the CNA or nurse BEFORE giving any food or drink to your loved one or another resident. Some residents are on restricted or special diets, or require foods or liquids of a specific texture or consistency to prevent them from choking. Giving a resident the wrong type of food or drink (even water!) can be potentially dangerous or harmful.

Also be aware that what is considered a “diabetic” diet at the facility may not be as strict as the diet your loved one follows at home. Discuss any concerns regarding your loved one’s diet with the head of Dietary Services.

8. Respect your loved one’s rights.

Your role as a family member is to help communicate your loved one’s preferences to the staff.  It is recommended that you provide the facility with a written personal summary of your loved one’s daily routine, so that the staff can understand better how to accommodate and meet his or her needs.

However, a resident’s wishes always come before those the family may consider important.  For instance, if your loved one wants to return to bed but you disagree because you think he or she spends too much time in bed, the staff cannot violate your loved one’s personal rights and will allow and assist him or her to return to bed.

In addition, the resident has the right to be free from restraints, even if you’re worried about his or her safety. Restraints can be used only if a doctor determines them medically necessary.  Some examples of restraints are bed rails, seat belts, and even medications, when inappropriately used to control behavior, for discipline or for staff convenience.

Unless a court, as part of a conservatorship proceeding, has determined that your loved one lacks capacity to understand and make decisions about medical treatment, your loved one has a right to know his or her true diagnosis and prognosis and to be informed of any changes in treatment or care, and should not be given any medications without his or her knowledge and consent.

9. Respect other residents’ rights.

As neither Medicare nor Medi-Cal will cover the cost of a private room, it is likely that your loved one will share a room with one, two or sometimes even three roommates.  Although a resident should feel at home in the nursing facility as much as possible, it’s important to respect other residents’ rights regarding noise levels, privacy, and visitors.  Being considerate of your loved one’s roommate(s) is important to the well being of both your loved one and his or her roommate(s).  Know the facility’s visiting hours and be especially considerate when visiting outside of normal visiting hours.  It may be necessary to visit with your loved one in another room at the facility if the visit is too noisy or disruptive to the roommate(s).  This is especially true during night-time hours when many of the residents are trying to sleep.

If your loved one desires to watch TV or listen to music at a loud volume, especially when his or her roommates are trying to sleep, it may be necessary for him or her to use headphones.

Do not hesitate to notify social services if there are serious roommate incompatibilities. A room transfer may be possible.

10. Visit and Participate as much as possible.

The best way to monitor your loved one’s care and identify any problems or concerns is to visit your loved one often and participate in the care process as much as possible.  Find out when he or she is receiving rehabilitation services and come in to observe them.  Your frequent presence helps to reinforce to your loved one and to the staff how much you care.

A full-care plan is created by the facility’s interdisciplinary team upon your loved one’s admission to the facility and is updated at a “Care Conference” meeting held for him or her every three months.   During these quarterly meetings, your loved one’s medical condition, rehabilitation progress, diet, activities, and other important information will be discussed.  If possible, it is recommended that you attend these Care Conference meetings.  Find out when the next one is scheduled for your loved one.  As the meeting will be fast paced, prepare a list of your questions and concerns ahead of time and bring a copy to share with the team and discuss.  If you cannot attend the scheduled Care Conference for your loved one, ask if it can be held at another time or if you can join in by phone.

Many facilities also have Family Council meetings where you can discuss issues about living in the nursing home.  In addition, if your loved one is capable, he or she could participate in the Resident Council meetings at the facility.  A Resident Council is an organized group of active nursing home residents who meet regularly to voice their concerns, offer their input on decisions, present suggestions for improving services and plan social activities.  Ask when the Resident Council meets and, if appropriate, encourage your loved one to attend.

Most facilities will also allow and may even accommodate visits by a patient’s pets.  However, before bringing the pets, you should find out and follow the facility’s policy on pet visits.

11. Communicate your needs and concerns.

Voice any concerns about your loved one’s care and life in the nursing facility promptly to the CNAs or the charge nurse.   Keep a notebook to remember specifics, especially dates and times, of situations that you want to address. The more detailed you are, the greater the possibility that any problems you identify will be corrected.  Just saying “the food is terrible” or “the care is awful” makes it difficult for the staff to know what you mean and how they can correct the situation.   Act as a problem-solver or option-creator, not a complainer, by answering the following questions: Can I prioritize the issues?  What is unacceptable? What do I really want?  What can I live with?  By doing so, realistic outcomes are achievable.  If you do not get a satisfactory resolution after addressing the problem with the staff most directly involved, then go up the chain of command.

However, before complaining about something, be aware of who is being upset by the situation.  Is it you or your loved one?  For instance, if your loved one’s clothes are not color coordinated, does it matter to him or her?  Or, does it really just matter to you? As the old adage goes, pick your battles.

If your loved one does have a complaint (or even a minor concern) ask him or her how he or she wants to deal with the situation.  Does he or she simply need to air feelings rather than have you confront the staff?  Sometimes, simply listening is the most effective response you can give.  Your loved one has to live in the nursing home, so it’s important that his or her wishes be respected.

Finally, and most importantly, be polite and friendly.  A nursing home staff is comprised of people doing a very challenging job.  Lifting and moving adults who are unable to help themselves is physically demanding.  Understanding the needs of residents who may be confused or unable to communicate for a variety of reasons is emotionally exhausting.   Recognize that the facility has many residents and the staff is very busy all of the time.  Nursing home staff members work hard to do a good job. Thank them for their efforts. You will accomplish more by being polite and friendly, rather than nasty and demanding, when requesting changes or bringing problems and/or concerns to the staff’s attention.  If you continue to have difficulties resolving a concern, contact the Long Term Care Ombudsman Program for assistance at (800) 231-4024.

In summary, immediately document and report concerns to the staff directly involved; clearly state your concerns and the outcome you would like; and be respectful in your interactions.

12. Tips about discharge

When it is determined that your loved one will be leaving the nursing facility, if you have any questions or concerns about how to care for him or her at home, arrange for training with the rehabilitation team several days in advance of the day of discharge from the facility. It is also important to set up an appointment with your loved one’s regular Primary Care Physician within 24-48 hours of discharge so that any changes in medications or care can be discussed.

Temporary, part-time, and limited Home Health Services needed by your loved one when he or she returns home will be covered by Medicare.   To arrange for these services you will need the facility physician to write an order for the services that will be needed.  Once you have that recommended order, the home health agency that you choose must contact your loved one’s regular primary care physician to write the order for the continuation of services.  It is your responsibility to make sure this contact with the primary care physician happens as, without the primary care physician’s order, Medicare will refuse to pay for the continued home health services.

 Final Thoughts…

Remember, no matter how good the nursing home, issues may still arise.  More than one person will be looking after your loved one, making communications and systems difficult to manage at times. One of the challenges you will face is figuring out the system and how it works, otherwise you will be setting yourself, your loved one and the nursing home up for failure.

For those that were forward thinkers and purchased Long Term Care insurance, that insurance can provide payments to help offset the costs of long term care in your home.  The policy typically will begin payments once the elder is unable to perform two activities of daily living.  Most policies have a stated maximum payout per day, and while this will cover some basic level of care, most policies will not cover the cost of 24/7 care.  However, the policies many times will provide enough funds to enable elders to remain at home with a minimal level of care.

In order to stay in their homes, some elders opt to obtain a mortgage on their home, but as a “forward” mortgage does require repayment, and has income requirements to qualify, many elders may not qualify or may not be able to maintain the monthly mortgage payments as their care costs increase.   In these situations, a reverse mortgage may be a good option.  A reverse mortgage allows elders to access the equity in their homes to pay for care and no repayment is required until the elder leaves the residence or passes away.  While fees and interest rates on a reverse mortgage can be high, this can still be a good option for elders who are “cash poor” and “house rich”.  The reverse mortgage primarily provides three payment options, with one being a set monthly payment, one being a flat amount up front, and the third option similar to a home-  equity line, where the senior can draw on the funds up to a stated maximum when those funds are needed.

For our totally and permanently disabled Veterans and their spouses, or those Veterans and spouses over the age of 65, funds may be available to pay for care costs if they qualify under the asset and income limitations.  Funds for Aid & Attendance are designed to supplement your resources to pay for care as the Veteran’s Administration wants you to pay for the care for which you can afford to pay.  The Aid & Attendance program (pension) is not widely known, and can provide up to a maximum of $1,703 to a single Veteran or $2,019 to a married Vet, for those that qualify under the asset and income tests.  These funds may be just enough to keep the Veteran and his/her spouse in their home with the necessary caregivers.

Other community resources are available to help our Elders remain in their home, and ensure that they are safe.  Resources include Outreach or other transportation services, to assist with transportation when the Elder no longer drives, Meals on Wheels and other meal services, to bring hot meals and easily prepared meals, Day Programs which provides needed respite for the family caregivers and for socialization for our Elders, with many programs specific for certain conditions, for instance Alzheimer’s.  If the Elder qualifies, In Home Support Services (IHSS) administered through Medi-Cal can provide limited funds for caregivers to come to the home to provide needed services.

While making healthcare decisions is often difficult in the best of circumstances, making decisions for others is even more complicated. Each of us has the ability to guide our healthcare providers and our loved ones about what we want. Advance directives give you the ability to document the types of healthcare you do and do not want, and to name an “agent” to speak for you if you cannot speak for yourself. As Terri Schiavo’s situation vividly revealed, having an advance directive can be valuable for all adults, regardless of current age or health status.

With the Patient Self-Determination Act of 1990, Congress affirmed the right of every citizen to set forth his or her future healthcare wishes in writing with an “advance directive.” Yet, various estimates suggest that only about 25% of all Americans have done so.   In recognition of this, National Healthcare Decisions Day strives to provide much-needed information to the public, reduce the number of tragedies that occur when a person’s wishes are unknown, and improve the ability of healthcare facilities and providers to offer informed and thoughtful guidance about advance healthcare planning to their patients.

The National Health Care Decision Day Web site has a variety of free information (including free advance directives forms for every state) and tools to assist with thoughtful reflection on healthcare choices and ideas on how to get involved. Please share this information with your loved ones and colleagues.

Social Security launched the Compassionate Allowances program in 2008 with a list of 50 diseases and conditions.  The latest announcement of 52 new conditions, which will become effective in August, will increase the total number of Compassionate Allowances conditions to 165.  There is a Complete List of Compassionate Allowance Conditions available at this link.

Additionally, starting April 21, 2012, adults who file for benefits online will have the option to electronically sign and submit their Authorization to Disclose Information to the Social Security Administration (Form SSA-827).  This will allow applicants to complete disability applications in an online session, rather than printing, signing, and mailing paper authorization forms to Social Security offices.

Some homeowners have been confused by the notice and have mailed $89, erroneously believing that they were paying a bill to the county recorder.  Others have sent in the $89 payment because they wanted to obtain the offered copy of their deed and a property profile.

You can obtain a copy of your deed from your county recorder. Some counties now allow you to order copies on-line or by telephone for a very minimal cost. You can obtain a property profile from a number of different websites for free. I often look up properties using Zillow to get an idea of the estimated property value and current tax assessment.

The SAA and attachments are available at California Department of Public Health Website. The form number for the  SAA and its attachments  is CDPH 327. The form and its attachments contain a lot of useful consumer information, including the contact information for the Ombudsman program and lists of the supplies and services that are covered by Medi-Cal and Medicare. The final attachment is The Resident Bill of Rights,  created by the State of California Department of Public Health.  The Resident Bill of Rights is a compilation of law from a number of sources, which are now conveniently gathered into one document.

The rights are found in state laws and regulations under California Health and Safety Code Section 1599; Title 22 of the California Code of Regulations, Section 72527 for Skilled Nursing Facilities, and Section 73523 for Intermediate Care Facilities; and Chapter 42 of the Code of Federal Regulations, Chapter IV, Part 483.10 et seq. The California Health and Safety Code is abbreviated as “HSC,” Title 22 of the California Code of Regulations is abbreviated as “22CCR,” and Title 42 of the Code of Federal Regulations is abbreviated as “42CFR.”

In our culture we often equate driving to independence. To preserve dignity, avoid isolation, and prevent the loss of independence, a plan needs to be in place for alternative forms of transportation.

Fortunately, there is a good resource for facilitating this discussion and discussing the alternatives.  The Alzheimer’s Association  now has a number of resources in their Dementia and Driving Resource Center, including safe driving checklists, resources for transportation alternatives, and videos to help families prepare for dealing with this difficult issue.

All California attorneys have to take a certain number of continuing education classes and report those units to the State Bar.  We attend various seminars to complete the required units and typically have hundreds of hours of classes between us.

However a unique type of program is called the Un-Program.  Rather than attending classes with a formal speaker, we meet with attorneys from all over the country and have the opportunity to discuss actual and complex legal situations in an informal setting.  We recently attended the National Academy of Elder Law Attorney’s (NAELA) Un-Program in Grapevine, Texas.  We spent three days meeting in small groups to discuss a variety of issues, with just general topics as the guide for the group.

This was a great way to discuss complex elder law issues including upcoming changes in Medicaid (Medi-Cal here in California), Veteran’s benefits, Special Needs Trusts and disability issues for our clients.  We had the opportunity to discuss cases and brainstorm options for those clients with the best elder law attorneys in the country.  We also have the ability to continue with the Un-Program format by discussing cases on the NAELA Listserve and in future conference calls that will be established.  We found this to be a wonderful resource for us and a great benefit to clients who have increasingly complex issues with federal benefits.

Digital Assets covers a broad range of assets and accounts.  Do you have on line access only to a bank or investment account?  Do you have your photos stored on line?  What about a Paypal account, or a Facebook account or credits on a virtual game?  All of these assets or accounts may be lost if your successors do not know about them.

We have encountered situations where assets are trapped with no access by family due to the inability to login and access them on-line.  Clients may not even be aware that the assets exist, and may not have any mechanism to determine if they have missed anything.  In addition, social media accounts and access to those accounts following incapacity or death is increasingly becoming a problem.

Consider the need to give your successor agents or trustees, or even family members, a list of logins and passwords to all of your accounts.  Security issues are clearly a concern, and one way to still have protection is to give the logins to one child and passwords to another.  Another is perhaps to utilize a password protection system and only leave the main password locked in a safe that a trusted family member can access.  Financial Powers of Attorney should now contain language to authorize access to these accounts, including the power to change login and password information.  We should also consider providing instructions to our agents as to what to do with our social media accounts when we pass away.

It is critical to keep a list of all digital assets, covering everything from investments, to photos to social media,  how they can be accessed and then keeping it up to date.  However, keeping that list solely in the computer may not provide any assistance as the family may be unable to access the computer.  Thus, ensure that a paper copy of the list of all digital assets has been printed and is maintained with your other estate planning documents.