A report from AARP warns that Baby Boomers should expect a massive shortage in caregivers available to provide care as they age. The report, “The Aging of the Baby Boom and the Growing Care Gap”, projects that by 2030 there will be only four potential caregivers available for each person 80 or older, down from a high of more than seven in 2010. By 2050, when Boomers are between 86 and 104, the ratio will drop below 3 to 1.

This shortage, dubbed the “2030 problem” results from several factors, such as the large number of Baby Boomers, the tendency of this generation to have less children and increased longevity. This problem affects women to an even greater degree due to higher life expectancies. The divorce rate and overall percentage of unmarried Boomers (1 in 3) means that many will not be able to rely on help from a spouse. The 80+ population will swell between now and 2040 while the younger cohort does not. As a point of reference regarding care needs, in 2010: 70.5% of those age 80+ had some disability, 55.8% had a severe disability and 30.2% needed help with daily living tasks (bathing, dressing, toileting, preparing meals, using the telephone and paying bills).

Despite stereotypes to the contrary, American families do provide the great majority of care for elders, with 80% of care provided by families. This unpaid care has a value of $450 billion dollars (statistic for 2009). Clearly, our society relies on informal caregivers to a great degree and this shortage is a major eldercare issue for both the country and individuals.

As the AARP spokesperson commented, it is going to be unrealistic for Baby Boomers to rely solely on family and friends for eldercare. It is essential that Boomers start eldercare plannng now, rather than waiting until that time when they need care. While we know that most people state the desire to stay in their own homes as they age, we also know that informal supports are a big part of that reality. Will this caregiver shortage force more people in to instutional settings? What about the parallel shortage of professionl caregivers (eldercare workers, in all settings)?

Making this problem all the more challenging for families, many Boomers are currently caring for their aging loved ones. This might raise awareness of these issues and lead to better planning, or it might affect income and savings negatively and detract attention from one’s own planning.

A Washington Post article on this report pointed to other countries with similar proportions, but noted that many have done advance planning and modified policies accordingly. Focusing legislators’ attention to this issue may not be so easy when, as Robyn Stone from Leading Age states, “Our country is sort of a muddling-through country, and we tend to respond more to crisis situations than long-term planning.” This also tends to be true of individual planning, as people still generally deal with eldercare in crisis mode. Hopefully this study is another wake up call for more individuals and families to consider proactive eldercare planning.

So what can you do as a Baby Boomer who wants to have some control over your aging process and eldercare needs?

1. Do some reading. Check out some of the quality websites and blogs on eldercare issues (you can check out our eldercare links page, subscribe to the Aging Wisely and EasyLiving blogs and we also highly recommend Sally Abrahms on AARP). Get an understanding of the key issues, follow policy changes and be aware of important factors such as what Medicare covers and does not.
2. Engage help for legal and financial planning. Finances play a big role in your eldercare options. The more you can do to prepare (saving, investing, purchasing insurance, understanding gaps between your assets and potential needs), the better your options. Legal planning (estate planning and advance care planning) is not just important as you reach your latter years. It should be in place for all adults. The reality is that accidents, illness, and death don’t just affect the elderly.
3. Consider a care consultation and bringing in a care manager to your planning team. As you do your financial planning and try to understand issues like Medicare/retirement health insurance and eldercare costs, the care manager can give you practical advice and answer questions so that you have a clear understanding behind the decisions you make.
4. Talk to your family. Keep your family informed of what you are doing and don’t make assumptions about caregiving roles. If you have family riffs, it might be especially important to address these concerns now.

This week, Aging Wisely’s Linda Chamberlain and Sue Talbott spoke at the Tampa Bay Financial Planners’ annual symposium. Their topic was “Effects of the Affordable Care Act on Special Needs Trusts”. For our readers who might personally be helping a special needs family member and professional advisors, we’ll share an overview of the topic and get in to some detail about resources to evaluate options.

Aging Wisely does not provide legal advice, such as when a special needs trust should be used or help in drafting one. However, we do provide a number of services related to special needs care and assistance for Special Needs trustees. We work closely with elder law attorneys who specialize in advising on these issues, and can make a referral if you need advice or assistance. This information is provided for educational purposes, and not as advice for your specific situation.

What is a Special Needs Trust (SNT) and why is one used?

In simple terms, a special needs trust allows funds to be used for the benefit of the person with special needs while preserving public benefits (such as SSI and Medicaid). Some of the situations where a special needs trust may be used include when a relative would like to leave an inheritance for a special needs child or when a disabled person receives an insurance or personal injury settlement.

Though a Special Needs Trust sometimes protects income benefits (such as SSI), it is typically the public medical benefits that are the most essential protected benefits. Even a person who receives or has a large sum of money may be uninsurable in the current healthcare landscape and quickly run through funds with high medical bills.

NAMI (National Alliance on Mental Illness) provides a good overview of the statute, types of Special Needs Trusts and purposes.

There are two basic types of Special Needs Trusts:

Self-settled (1st party) are established with funds belonging to the beneficiary; these trusts require a payback provision (in other words, the costs of benefits provided by the state must be paid back to the state upon the beneficiary’s death before any residual beneficiaries can receive remaining funds).

3rd party trusts can be set up by anyone (without a financial obligation to support the beneficiary) with funds that do not belong to the beneficiary; third party trusts do not require a payback provision.

How does the Affordable Care Act (aka Obamacare) potentially change the need for a Special Needs Trust?

• Previously uninsurable clients may now be able to get private medical insurance (due to ACA provisions eliminating pre-existing conditions and state health insurance exchanges).
• Some clients become disabled but already have private insurance. However, they max out their policy’s lifetime benefits and thus need public benefits. Under ACA, lifetime benefits and some other restrictions will also be eliminated, which may allow private insurance to now meet these individuals’ medical needs.

The latest United States of Aging survey reports that most seniors have a positive outlook, but worry about money and community preparedness to assist with aging and eldercare issues. This telephone survey, sponsored by National Council on Aging, United Healthcare and USA Today, covers about 4,000 adults including a representative sample of 60+ year olds.

Most of the seniors in the survey reported few current issues with paying their bills. They did, however, worry about how well their communities are prepared for the burgeoning senior population.  Many wonder if their financial resources will be enough for what they will need for the rest of their lives (more than half are concerned they will outlive their money), and if community resources will be available to help.

Survey respondents reported more use of technology and cited its importance in keeping them connected. Maintaining ties with friends and family was chosen as the most important factor in quality of life.  Experts note that there is still too little emphasis on proactive prevention. Though 65% of seniors have at least two chronic health conditions, 18% never exercise and many more get very little exercise.  More than half have not set any goals to manage their health in recent months.

Despite the overall positive outlook, the survey also shows that lower income seniors and those suffering chronic health conditions face many more difficulties and worries.  These issues can be deeply troubling for those who fall in to both categories.  More than a quarter of low-income seniors had done no preparation for their elder years.

So, what take-away lessons can we gather from this survey?

• Our communities should be prioritizing focus on aging issues and resources.  Many communities may even have a wealth of resources, but access to information or awareness may be the issue.
• Proactive aging and preventative healthcare are still lacking. Communities and healthcare professionals should be emphasizing prevention. Few respondents received any help with creating an action plan for health or were encouraged to use community health resources. Sharing specific steps and positive role models may be more successful than simply lecturing on exercise and health.  Individuals should consider making one significant investment/step for their health this year.
• Financial planning/evaluating resources is a key part of aging and eldercare planning.  It can help to get a basic understanding of healthcare and long-term care costs and to work closely with a financial planning professional to map out a plan.  For seniors needing eldercare, finances are an important piece of the puzzle. Geriatric care managers and elder law attorneys can help you connect the pieces.
• Staying connected to others is not only valued, but acknowledged as key to quality of life. This should be incorporated in to aging planning just as importantly as a health plan or physical assistance.  Isolation is shown to not only increase depression, but to have direct health effects.

The PBS Frontline show, Life and Death in Assisted Living, highlights some major problems in the senior living industry: our commentary and tips for families

PBS’s Frontline recently aired a show exposing some major issues in the Assisted Living industry, specifically focusing on what they uncovered over 14 months researching lawsuits against Emeritus facilities. The team of reporters examined numerous lawsuits against the corporation, interviewed employees, residents and families, reviewed Ombudsman records and talked to many experts and regulators in the industry. The reports certainly expose a lot of scary information, especially for those of us who have loved ones living in assisted living or who may need those services at some point. You can check out the show and related segments and articles at PBS: Life and Death in Assisted Living.

Undoubtedly, this series will spark a lot of debate and discussion. Is this a matter of companies putting profit over care in senior housing? Is it only the big corporations to blame? Is more regulation the answer? Are there good senior living providers? Is the answer better pay, training and support for care staff?  How do we as a society deal with elders living longer needing higher levels of care? What can families do when they need help caring for a loved one? Is this an “assisted living problem” or a more pervasive problem at different levels of senior care? The series raises these and other daunting questions, with no easy answers.

At Aging Wisely we know, however, that the most important thing for families in all of this is how to get quality care for their loved one. Clearly, there are a loft of things that may need to be done in the industry at large, and the system for regulation and oversight may need an overhaul. We don’t want to appear in any way to negate the responsibility of providers to provide quality care and adequate staffing, or to further the guilt that families may feel in this whole process. However, these problems will not be resolved easily so we want to help families with some practical tips to access/ensure better care.

Here are some essential tips for finding quality care:

1.  Start with a clear assessment of what is needed and what type of care fits best (for the person’s needs, budget, desires, lifestyle, etc.). Engage an expert, and preferably an independent one. The place to start is not with a particular facility or care provider. They may be the nicest people on earth and may very well help you, but there is naturally a bias toward the option they offer. You need to look at the person’s needs and then determine, out of the array of senior care options, what choices are most appropriate.

Some of the biggest problems exposed in assisted living have revolved around inadequate staffing in relation to the care needed. Assisted Living was not originally envisioned as providing the level of care we’re sometimes seeing now. Some Assisted Living Facilities are accepting residents that they should not be and allowing residents to stay when they need more care. Whatever the motivations behind this, it is important that you get a clear picture of how the needs match with the level of care that can really be provided.

2.  Focus behind-the-scenes.  Don’t get caught up in the physical presentation of a care facility.  It can be easy to be wowed by a beautiful place.  It is especially challenging when your parent is moving from home and you see a place that offers beautiful or large spaces, something that can be very appealing.  The search for care should be considered more like searching for the best specialist for a rare disease/surgery, rather than looking for a new home or apartment.  You can review state inspection reports, get references and most importantly, talk to someone “in the know”.

3.  First impressions should be great, but try to get a handle on what will happen after your first impressions.  In other words, you will probably meet some wonderful marketing staff when you are looking at care options. But, sales and marketing staff will not be the primary people you will deal with after moving in to assisted living.  Make sure to meet other staff and ask questions about how different issues are handled and who to contact about various needs.

What can you do after moving in to Assisted Living to help ensure good care?

1.  Oversight is essential.  Family and friends should visit often and get to know staff.  Ask questions and keep abreast of any changes.  Particularly if you live at a distance, consider hiring a geriatric care manager to make regular oversight visits and provide advocacy for your loved one.  Even if you live nearby, it is helpful to consult with a professional who can help you navigate expectations and how to get things accomplished.

2.  Assessment should be an ongoing process.  If something changes with your loved one, it might be time to get a reevaluation to ensure the care is still appropriate.  If some time has passed since your loved one moved in, consider a review of the current care plan and needs. Even if the level of care is still appropriate, there are often coordination issues and care planning changes necessary.

3.  Monitor transitions carefully.  It is well-documented that elders bounce back to the hospital at significant rates, often because of gaps in care and communication.  Evaluate the best plan of action after a hospital stay or rehabilitation.  Is the assisted living facility still able to provide the level of care needed?  Would it be useful to have some extra help during the transition?

We will share more information in future articles about the process for making complaints with care at an assisted living or other senior living facility as well as the regulations and oversight of these facilities in Florida.

You may want to check out our Guide to Choosing the Best Senior Living Facility and we invite your calls at 727-447-5845 for help any time!

Aging Wisely geriatric care managers serve as patient advocates and resource experts for families with loved ones in Tampa Bay.  We help with geriatric assessments, facility choice and transition, ongoing oversight and more!