US Senate Passes 21st Century Cures Act

21st Century Cures ActA sprawling health bill that passed the Senate Wednesday and is expected to become law before the end of the year is a grab bag for industries that spent plenty of money lobbying to make sure it happened that way.

Here are some of the winners and losers in the 21st Century Cures Act:

Winners

Pharmaceutical and Medical Device Companies. The bill will likely save drug and device companies billions of dollars bringing products to market by giving the Food and Drug Administration new authority and tools to demand fewer studies from those companies and speed up approvals.

The changes represent a massive lobbying effort by 58 pharmaceutical companies, 24 device companies and 26 “biotech products and research” companies, according to a Kaiser Health News analysis of lobbying data compiled by the Center for Responsive Politics. The groups reported more than $192 million in lobbying expenses on the Cures Act and other legislative priorities, the analysis shows.

Medical schools, hospitals and physicians. The bill provides $4.8 billion over 10 years in additional funding to National Institutes of Health, the federal government’s main biomedical research organization. (The funds are not guaranteed, however, and will be subject to annual appropriations.)

The money could help researchers at universities and medical centers get hundreds of millions more dollars in research grants, most of it toward research on cancer, neurobiology and genetic medicine.

21st Century Cures ActThe bill attracted lobbying activity from more than 60 schools, 36 hospitals and several dozen groups representing physician organizations. They reported spending more than $120 million in disclosures that included Cures Act lobbying.

Mental health and substance abuse advocates. The bill provides $1 billion in state grants over two years to address opioid abuse and addiction. While most of that money goes to treatment facilities, some will fund research.

The bill also boosts funding for mental health research and treatment, with hundreds of millions of dollars authorized for dozens of existing and new programs.

Mental health, psychology and psychiatry groups spent $1.8 million on lobbying disclosures that included the Cures bill as an issue.

Patient groups. Specialty disease and patient advocacy groups supported the legislation and lobbied vigorously. Many of these groups get a portion of their funding from drug and device companies. The bill includes more patient input in the drug development and approval process, and the bill is a boost to the clout of such groups.

More than two dozen patient groups lobbied the bill, and reported spending $6.4 million in disclosures that named the bill as one of their issues.

21st Century Cures ActHealth information technology and software companies. The bill pushes federal agencies and health providers nationwide to use electronic health records systems and to collect data to enhance research and treatment. Although it doesn’t specifically fund the effort, IT and data management companies could gain millions of dollars in new business.

More than a dozen computer, software and telecom companies reported Cures Act lobbying. The groups’ total lobbying spending was $35 million on Cures as well as other legislation.

Losers

Preventive medicine. The bill cuts $3.5 billion — about 30 percent — from the Prevention and Public Health Fund established under Obamacare to promote prevention of Alzheimer’s disease, hospital acquired infections, chronic illnesses and other ailments.

Consumer and patient safety groups. Groups like Public Citizen and the National Center for Health Research either fought the law outright or sought substantial changes. Although they won on some points, these groups still say Cures opens the door for unsafe drug and device approvals and doesn’t address rising drug costs.

Hair growth patients. The bill says federal Medicaid will no longer help pay for drugs that help patients restore hair. The National Alopecia Areata Foundation spent $40,000 on lobbying disclosures this cycle that included Cures.

The FDA. The bill gives the FDA an additional $500 million through 2026 and more hiring power, but critics say it isn’t enough to cover the additional workload under the bill. The agency also got something it opposed: renewal of a controversial voucher program that awards companies that approve drugs for rare pediatric diseases.

(Kaiser Health News, Sydney Lupkin and Steven Findlay, December 7, 2016)

ACA Reporting Due Early 2017

ACA DeadlinesBy Michael Berwanger, JD, Director, Quality Management & Compliance

In early 2017, employers and insurance carriers must report information to employees and the IRS about coverage offered to employees under employer-sponsored health plans during calendar year 2016.

Background

The Patient Protection and Affordable Care Act (ACA) requires self-funded employers to satisfy two reporting obligations under Sections 6055 and 6056 of the Internal Revenue Code, relating to health coverage offered to employees and about those employees who are covered under the plan.

The purpose of the reporting obligations is to allow the IRS access to data needed to monitor compliance with both the employer and individual mandates. The reporting also may be used by affected employees in assessing their own compliance with the individual mandate and/or in seeking subsidized coverage on the federal and state exchanges established under the ACA (as described in this blog post).

Section 60ACA reporting55 Reporting Compliance

Under Section 6055 of the Internal Revenue Code, all self-funded employers must annually report information to the IRS and to any individual who is covered under a health plan offered by the employer.

Currently, many employers do not have access to Social Security numbers for non-employed dependents, creating a fairly significant compliance burden to collect that data. The regulations require that employers exercise “reasonable collection efforts” to obtain that information. (Typically, an employer will satisfy that standard by documenting at least two efforts to request the data from those individuals). This same information must be reported to employees, along with basic contact information for the employer.

Section 6056 Reporting Compliance

The second reporting obligation, under Code Section 6056, applies only to “Applicable Large Employers.” Applicable Large Employers are those employers with at least 50 full-time equivalent employees and to whom the ACA’s employer mandate applies.

Unlike Section 6055 reporting, all of this information also must be provided separately to each employee, full-time, part-time, or otherwise. You can read helpful IRS guidance about 6056 reporting here.

IRS Forms 1094 and 1095

The compliance obligations are complex, and the IRS has developed forms (Forms 1094-B, 1095-B, 1094-C, and 1095-C) to provide consistency in reporting and to help simplify the process for employers.

Applicable Large Employers (ALEs) who offer coverage under a self-funded health plan may use Form 1095-C, which combines the reporting obligations of Sections 6055 and 6056 in a single form for reporting to both the IRS and individuals. When the forms are provided to the IRS, the Applicable Large Employer also must submit a transmittal form, Form 1094-C. Forms 1095-C and 1094-C, along with instructions, can be accessed here.

Small employers with fewer than 50 full-time equivalent employees are only required to meet one of the reporting obligations, the Minimum Essential Coverage reporting under Section 6055. Small employers may use Form 1095-B, with transmittal Form 1094-B. These forms, along with instructions, can be accessed onACA reporting the IRS web site here.

Changes from reporting year 2015 to 2016 for forms 1094-C and 1095-C can be found here.

Changes from reporting year 2015 to 2016 for forms 1094-B and 1095-B can be found here.

Compliance Deadline

Filings will begin in early 2017 for the 2016 calendar year.

*Form 1095-C must be provided to all employees (full-time, part-time, or otherwise) by March 2, 2017.

*All Forms 1095-C, along with the transmittal form, 1094-C, must be provided to the IRS by February 28, 2017 (if in paper form), or March 31, 2017 (if filed electronically). 

Note: Employers filing more than 250 information returns (Form 1095-C) must do so electronically.MedCost

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2016 ACA Employer Deadlines Extended

2016 ACA Employer Deadlines

By Michael Berwanger, JD, Director, Quality Management & Compliance

The Internal Revenue Service (IRS) released Notice 2016-70, which extends the due date for furnishing to individuals the 2016 Form 1095-B (titled Health Coverage), and the 2016 Form 1095-C (titled Employer-Provided Health Insurance Offer and Coverage), from January 31, 2017 to March 2, 2017.

Self-funded employers should note that the filing deadlines remain unchanged. The Notice states that the “Treasury and the [Internal Revenue] Service have determined that there is no similar need for additional time for employers, insurers, and other providers of minimum essential coverage to file with the Service the 2016 Forms 1094-B, 1095-B, 1094-C, and 1095-C.”

Employer Deadlines

Therefore, the due dates for filing 2016 Forms 1094-B, 1095-B, 1094-C, and 1095-C with the IRS remain:

February 28, 2017 (for paper filing)

March 31, 2017 (for e-filing)

Employers may obtain a 30-day extension for filing with the IRS by filing Form 8809 on or before the forms’ due date.

The IRS has also extended last year’s good-faith transition relief for inaccurate information on the forms. Recognizing the “challenges involved in developing new procedures and systems to accurately collect and report information in compliance with new reporting requirements,” the IRS has provided relief to incorrect and incomplete information reported on the statement or return.

Please note: The good-faith relief applies only to data on the forms, not failure to comply with due dates.MedCost

 

Dementia Declines in US Seniors, Study Finds

dementiaA new study finds that the prevalence of dementia has fallen sharply in recent years, most likely as a result of Americans’ rising educational levels and better heart health, which are both closely related to brain health.

Dementia rates in people over age 65 fell from 11.6 percent in 2000 to 8.8 percent in 2012, a decline of 24 percent, according to a study of more than 21,000 people across the country published Monday in The Journal of the American Medical Association Internal Medicine.

“It’s definitely good news,” said Dr. Kenneth Langa, a professor of internal medicine at the University of Michigan and a coauthor of the new study. “Even without a cure for Alzheimer’s disease or a new medication, there are things that we can do socially and medically and behaviorally that can significantly reduce the risk.”

The decline in dementia rates translates to about one million fewer Americans suffering from the condition, said John Haaga, director of behavioral and social research at the National Institute on Aging, part of the National Institutes of Health, which funded the new study.

Dementia is a general term for a loss of memory or other mental abilities that’s severe enough to interfere with daily life. Alzheimer’s disease, which is believed to be caused by a buildup of plaques and tangles in the brain, is the most common type of dementia. Vascular dementia is the second most common type of dementia and occurs after a stroke.

dementiaThe new research confirms the results of several other studies that also have found steady declines in dementia rates in the United States and Europe. The new research provides some of the strongest evidence yet for a decline in dementia rates because of its broad scope and diverse ranges of incomes and ethnic groups, Haaga said. The average age of participants in the study, called the Health and Retirement Study, was 75.

The study, which began in 1992, focuses on people over age 50, collecting data every two years. Researchers conduct detailed interviews with participants about their health, income, cognitive ability and life circumstances. The interviews also include physical tests, body measurements and blood and saliva samples.

While advocates for people with dementia welcomed the news, they noted that Alzheimer’s disease and other forms of memory loss remain a serious burden for the nation and the world.  Up to five million Americans today suffer from dementia, a number that is expected to triple by 2050, as people live longer and the elderly population increases.

The number of Americans over age 65 is expected to nearly double by 2050, reaching 84 million, according to the U.S. Census. So even if the percentage of elderly people who develop dementia is smaller than previously estimated, the total number of Americans suffering from the condition will continue to increase, said Keith Fargo, director of scientific programs and outreach, medical and scientific relations at the Alzheimer’s Association.

“Alzheimer’s is going to remain the public health crisis of our time, even with modestly reduced rates,” Fargo said.MedCost

(Kaiser Health News, Liz Szabo, November 21, 2016)

How to Skin a Phish

PhishingBy Andrew Ramos, MedCost Director of Information Technology

Have you ever had someone go “phishing” for your personal information? Whether it’s your bank account, your medical information or your Facebook account, hackers are posing as legitimate companies or government entities in order to defraud you.

How Phishing Works

Cybercriminals have developed new ways to target organizations. Phishing often involves an impersonation of a specific employee at a company. In this instance, a cybercriminal could scour internet sites for information about a company and its leadership. Then an employee may receive a false email from a “staff member” in a bid to secure the victim’s trust.

If the targeted employee believes the email is authentic, the criminal can then leverage the employee’s interaction with the email to either install malicious software on the victim’s computer, or ask the victim to send them highly confidential information. This technique has proven to be very effective, sparking widespread concerns for the safety of protected or confidential information throughout many industries.

Four Facts about Phishing

Consider these important insights:

*Health care is a phishing target.
A successful phishing campaign at Middlesex Hospital affected the personal information of approximately 950 patients. The hospital responded by offering free credit monitoring for a year, and said the successful phishing attack did not include direct access to full medical records or Social Security numbers.

*Phishing isn’t just a corporate problem.
Time Warner Cable said that up to 320,000 customers may have had their passwords compromised by a targeted phishing attack, and urged these customers to reset the passwords on their accounts. Yahoo! reported a loss of over 500 million user accounts and associated passwords. These incidents happen regularly, and it is a growing importance that average consumers maintain good security practices.

*Social Media is a pond for phishing.
People love to communicate. We all routinely share information about our favorite place to grab a latte, our anniversary, our birthday, and so much more! Hackers know that. Even the platforms can be a place where cybercriminals try to solicit information from unwitting consumers. For example, A Facebook page named “Facebook Security” that warns ‘Your page will be disabled’ is making the rounds. The page redirects you to a phishing site designed to steal your login information.

*Building a sensitivity to phishing is key to a Security Program.
How many of your employees will click on a phishing email? JPMorgan Chase & Company was able to dupe 20% of its staff into clicking the fake phishing email. Would your company want to send a fake phishing email to gauge susceptibility of your employees? This site evaluates susceptibility to phishing for companies.

So What Can I Do?

The FTC has issued guidance for both consumers and businesses.  Reputable industry experts such as Michael Magrath at VASCO Data Security recommends stronger, multifactor authentication for employee access to sensitive data. Biometrics, security keys or a one-time code through a mobile app are some of the authentication tools available. Systems and servers should be in place to help thwart the impact of employee credentials that are compromised.

Chief Information Security Officer Heather Roszkowski is taking steps to combat the spike in phishing attacks and other external threats at the University of Vermont Health Network. She is implementing two-factor authentication along with encryption to protect patients’ Protected Health Information (PHI). Increased security controls “for anything facing the Web…can pretty much render phishing attacks that are designed to steal credentials useless,” said Ms. Roszkowski.

But it’s also important to remember the human element in the battle against external threats, says Dan Berger, CEO of consulting firm Redspin. “You’ve got to be training your people so that they’re not susceptible to phishing or social engineering type of attacks.”

Don’t let your company be a victim of cybercrime. Put systems in place and educate your staff to avoid records being lost, inappropriately accessed, stolen, or otherwise compromised, costing your company time, labor, legal costs, and other devastating results.

And keep those criminal phish from getting a hook in you.MedCost

IRS Announces 2017 FSA Limits

By Michael Berwanger, JD, Director, Quality Management & Compliance

The Internal Revenue Service recently announced the tax year 2017 annual inflation adjustments for more than 50 tax provisions.

Notably, for the first time in two years and consistent with industry expectations, the IRS has increased the dollar limitation under § 125(i) on voluntary employee salary reductions for contributions to health Flexible Spending Accounts (FSA) from $2,550 to $2,600.

The Revenue Procedure 2016-55 provides details about these annual adjustments. The tax year 2017 adjustments generally are used on tax returns filed in 2018.

2017 FSA

 

 

 

For guidance on FSAs, please review the IRS Frequently Asked Questions page.

 

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Heart Disease: My Story

This 14-year MedCost employee worked hard to maintain good health—until one day, when he almost lost it all.

By Don Holmes, Customer Service Representative, MedCost

heart disease

I work out between three to four times weekly at the YMCA. My routine usually includes a 35-minute vigorous jog on the treadmill. On alternate days I lift weights.

In the fall of 2007, I began to notice some occasional, uncomfortable heaviness in my chest, especially during periods of exertion. I initially attributed it to pushing a little too hard, or soreness from a previous workout.

One afternoon after work, I went over to the Y to get in an additional workout. Within 5 minutes on the treadmill, I knew something was different and potentially serious.

The heaviness in my chest began much more quickly, and it was painful enough to cause me to stop. As a precaution, I asked the weight room attendants to check my blood pressure. The blood pressure reading was off the charts!

We waited several minutes and took my blood pressure again. It was still in the danger zone.

The attendants said I needed an ambulance, but I insisted on driving home. I told them I would see my doctor the next day. That night the pain lingered as I tried to fall asleep.

The next morning when I arrived at work, I called my doctor’s office and told the nurse what had happened. I gave her the blood pressure readings. She calmly but firmly said: “I want you to hang up immediately and dial 911. You must go to the hospital now.”

How could I be fit enough to work out frequently and still have this happen? I immediately went to the hospital. A heart catheterization revealed I had major blockages in the front and back of my heart. Doctors performed a quintuple bypass operation on me.

I was extremely fortunate that I did not experience a heart attack, but it was imminent. Thankfully, the heart muscle was fine and there was no damage. But I had to make some significant lifestyle changes.

The American Heart Association has been an invaluable resource in helping me to educate myself on how to improve my overall health and make better food choices. They even offer great suggestions on workout routines.

This Saturday, October 29, my company is partnering with Wake Forest Baptist Health, Gentiva, HanesBrands and many others to sponsor the Winston-Salem Heart & Stroke Walk. Besides the “Pooches on Parade” contest, the live band and the beautiful weather, every person has a chance to walk one, two or four miles to strengthen your heart. 

It’s not too late to register! Watch this WXII video of Allison Brashear, MD, describing heart and stroke as two of the top four killers in this “Stroke Belt” of the country. The American Stroke Association says that 80% of strokes are preventable.

Activities begin this Saturday at 8 am and we walk at 9:30 am. It’s a privilege I’ll never take for granted again.

5 More Tips for a Smooth Open Enrollment

open enrollmentDoes open enrollment for your Human Resources department seem like “Nightmare on Employment Street?” Our first post listed five practical tips to streamline the open enrollment period for annual benefits. Check out these five additional best practices to chase the confusion away:

 1. Make sure you provide all of the data requested by your claims administrator.

Inaccurate or incomplete data can result in time-consuming, frustrating mistakes. Remember to enter information exactly as provided in previous enrollments. Unique and accurate identifying information must be entered for each dependent.

 2. Collect waiver forms from your employees.

For ACA reporting and Department of Labor requirements, you as the employer need to keep proof of waived coverage on file. Here is a Compliance Assistance Guide from the U. S. Department of Labor that offers more information. MedCost provides our clients with a generic form as part of our benefits’ services, if clients do not have one.

3. If you submit updated enrollment data on paper forms or by spreadsheet, information on new hires, changes, and terminations is all that is needed.

It may seem counterintuitive, but full enrollment data is not required and can actually slow down the input process for your claims administrator.

Note: This does not apply to clients that electronically submit enrollment data via 834 transaction. 

4. When open enrollment is over, it’s over—no extensions.

health insurance noticesStick with the open enrollment deadline you set. Announce the deadline and remind employees of it several times during the open enrollment period. It is then the employees’ responsibility to complete the required enrollment process by the deadline. Remember, open enrollment is a finite time period, not an ongoing process.

5. Once you’ve collected enrollment data, submit it all at one time.

Submitting information piecemeal or in multiple spreadsheets that have to be merged or compared to previous submissions only increases the chance for errors. Avoid confusion with one complete submission of enrollment data.

Don’t let your open enrollment become a nightmare. Competent claims administrators can help advise you of all compliance requirements and deadlines. And turn your nightmares into sweet dreams.MedCost

Got Employees? 5 Tips for a Smooth Open Enrollment

open enrollmentIt’s that time of the year that presents headaches for HR professionals and admin staff—open enrollment. But your company’s benefits administration doesn’t have to resemble a Halloween Fright Night. Here are five best practices to streamline your employees’ enrollment period and leave you with a basket of sweet candy:

1. Create a realistic schedule for open enrollment by beginning with the end in mind.

Your open enrollment period should end no later than 30 days prior to the end of your plan year or renewal date. Once you determine the ending date of open enrollment, back up from there to schedule open enrollment meetings, print forms or materials, distribute or mail open enrollment packets, etc.

2. Collect all required information for each plan participant (employee or dependent).

This may include information for each plan participant such as:

  •  Last Name, First Name and Middle Initial (exactly as provided in previous enrollments)
  •  Social Security Number (unique and accurate identifying information for each dependent)
  •  Address
  •  Date of Birth (unique and accurate identifying information for each dependent)
  •  Gender
  •  Hire Date (if an employee)
  •  Coverage Effective Date
  •  Product Coverage (Medical, Dental, Flex)
  •  Date of Termination, if applicable, and Reason for Term
       (especially needed for COBRA)
  •  E-mail address (useful to promote programs and services available through benefits plan)

3. Remind employees that “good data in equals good data out.”

open enrollmentStress the importance of completing all fields on any enrollment or waiver forms. It’s in every plan participant’s best interest to review and verify new and existing data during open enrollment since it directly affects coverage for the upcoming plan year. Decisions regarding participants’ eligibility and coverage under the health plan—as well as that of their dependents—are made based on the information provided during open enrollment.

4. Educate employees about the “not-so-flexible” guidelines of flexible spending accounts (FSAs), if available through your plan.

In addition to the advantages of flexible spending accounts, make sure your employees also know about the guidelines for FSAs. The most important thing for employees to remember is that FSAs are “use it or lose it” accounts. Contributions made to an FSA during a calendar year can be used only for eligible expenses incurred during the same year—unless your plan provides for either a grace period or a carryover. If your plan doesn’t provide for a carryover, employees need to be aware that any money remaining in an FSA account after the claim filing period at the end of the year (and after the grace period, if applicable) is forfeited in accordance with IRS regulations.

5. If your employees have flex debit cards, remind them to save all receipts for purchases made with the card.

open enrollmentSince a flex debit card deducts payment for an eligible health care expense directly from an FSA account, employees may think that saving health care receipts is unnecessary. Some claims for reimbursement, however, may require substantiation. Encourage employees to save all receipts for flex debit card purchases in case they receive a substantiation request or their tax return is audited by the IRS. Employees should hold on to their cards even if the allocated FSA total amount has already been used.

Our next blog will contain five more tips to plan and prepare for open enrollment like a pro. Subscribe to our blog to receive it automatically!*

 

*To sign up for the blog, go to the left margin under “STAY UP TO DATE.” The only requirement is your email address. 

 

6 Tips for Family Caregivers

Man with walker

Ask Kathy Kenyon about what it’s like to be a family caregiver, and she’ll give you an earful.

On several occasions, doctors have treated this accomplished lawyer like she was an interloper — not the person to whom her elderly parents had entrusted health care and legal decision-making.

Kenyon wasn’t told how to identify signs that her mother, who had low sodium levels, was slipping into a medical crisis. Nor was she given any advice about how to prevent those crises from occurring.

When her parents — both with early-stage dementia — moved to the Washington, D.C. area, it took months for medical records to be transferred because Kenyon’s right to the information wasn’t initially recognized.

An aberration? Hardly, according to a long-awaited report on family caregiving from the National Academies of Sciences, Engineering and Medicine, which acknowledges that the nearly 18 million caregivers for older adults are routinely marginalized and ignored within the health care system.

“Caregivers are, on the one hand, heavily relied upon but on the other hand overlooked,” said Richard Schulz, chair of the 19-member expert panel that crafted the report and a professor of psychiatry at the University of Pittsburgh.

Deeming that unacceptable, the panel has called for extensive changes to the health care system, including a family-centered approach to care that would recognize caregivers’ essential contributions.

What might that look like, practically, from a caregiver’s perspective? The report doesn’t say, but recommendations can be extrapolated from its findings.

Your identity needs to be documented in your loved one’s medical records.

shutterstock_78284827-converted-100-by-100“We need to start by having a clear sense of who the caregiver is” so that individual can be recognized as part of a team looking after an older adult, Schulz said. Currently, this doesn’t happen routinely.

That’s beginning to change. Thirty states, the District of Columbia, the U.S. Virgin Islands and Puerto Rico have now passed versions of the Caregiver Advise, Record, Enable (CARE) Act, drafted by AARP, which calls for information about family caregivers to be included in hospital medical records.

At every doctor’s appointment with an elderly family member or friend, check that the record lists your name and phone number, and ask that you be contacted in any kind of emergency.

Your capacity to provide care to a loved one should be assessed.

man-pushing-wheelchair-250-by-283A classic example: An elderly man with diabetes and severe arthritis who weighs 220 pounds is discharged from the hospital, barely able to walk. His elderly wife, who weighs just over 100 pounds, is his caregiver and she’s expected, somehow, to help him get in and out of bed and keep him from falling.

“No one asks you if you’re comfortable doing the things you’ll need to be doing, if you have the time or what other responsibilities you have,” said Laura Gitlin, a member of the panel and director of the Center for Innovative Care in Aging at Johns Hopkins University School of Nursing.

Your job: Speak up and tell doctors, nurses or social workers what you can and cannot do.

Your capacity to provide care should be incorporated into your loved one’s care plan.

Your abilities and limitations need to be recognized and addressed in every care plan that’s developed for your loved one. If you work from 7 a.m. to 3 p.m. and a parent needs help toileting, dressing and eating breakfast in the morning, for instance, that gap needs to be acknowledged and discussed.

There’s a lot at stake: Unrealistic expectations about caregivers’ capacities put the health of seniors — and caregivers’ own health — at risk.

You should get training in medical tasks for which you’ll be responsible. 

shutterstock_78284827-convertedMore than half of family caregivers don’t receive training in the tasks they’re expected to perform for loved ones at home: dressing wounds, changing catheters, administering medications or managing incontinence, for instance.

Although the CARE Act calls for training to be provided in hospitals and rehab centers, this isn’t happening on a widespread scale, yet.

Nothing substitutes for hands-on instruction, usually from a nurse. Be sure to reach out to hospital, rehab or home health nurses and ask for help understanding what you need to do and how to do it.

You should be connected with community resources that can be of help.

istock61894164A variety of resources for caregivers are available in many communities: local Area Agencies on Aging, which offer assistance accessing services; centers on independent living, which help people with disabilities; and disease-focused groups such as the Alzheimer’s Association, among other organizations.

But too often, “it’s not at all clear where families should turn when they get a diagnosis,” Gitlin said. “No one tells them who they should contact or which resources might be most helpful.”

Ask for this kind of information from your physician’s office, discharge staff at a local hospital and people you know in the community. The government’s Eldercare Locator is a good place to gather names of local organizations that may be of help.

You should be given access to medical records and information.

Misunderstanding of the medical privacy act known as HIPAA (Health Insurance Portability and Accountability Act) is common and creates barriers to family caregivers getting information they need to oversee a loved one’s care.

discharge-shutterstock_122948044-converted-225-by-233In fact, medical institutions are obligated to hand over information when an older adult has granted a caregiver a durable power of attorney for health care decisions or a HIPAA authorization specifying that they receive access to medical materials.

In written testimony to the government, Kenyon said she was once told she couldn’t walk down a hall to see her father in a sleep center because doing so would violate HIPAA. That was an ill-informed interpretation of the law.

While there’s no easy solution, standing up for yourself is essential. “Advocate for your rights and make sure your caregiving contributions are recognized and supported to the extent they can be,” said the University of Pittsburgh’s Schulz. “You’re an important person in the health care system.”MedCost

(Kaiser Health NewsJudith Graham, September 29, 2016)