Some senior adults need a bit of help and care, but when a senior has a special need, the level of care increases significantly. With the right resources, you can create a plan of care that will ensure your loved one’s needs – from healthcare through financial – are well met throughout their retirement years.
Unfortunately, most available programs specialize either in special needs or advanced age. Our goal is to provide you with a master list of resources that you can tap into to find solutions for your loved ones.
Common Problems Faced as Special Needs Seniors Age
When an aging adult has a cognitive need, a physical concern, or a mental health concern (PTSD or dementia), adding aging to the mix can create some struggles for the older adult. Some of these problems include:
- Financial Concerns – Limited financial resources and full-time earning opportunities can make senior years even more challenging.
- Medical Concerns – Mounting medical needs, medical bills – including those for adaptive equipment – prescription costs, and home care can rapidly accumulate.
- The Need for Decision Makers – Developmental, cognitive and physical disabilities may require the individual to have a decision maker.
- Challenges with Social Communication and Understanding – A lack of social communication and understanding can make it challenging for disabled seniors to function in society.
Financial Resources Available to Special Needs Seniors
While special needs adults have a number of financial concerns that must be addressed, they also have some financial resources they can tap. Some of these resources are specific to older adults, and others are limited to special needs adults. If you are in a position of helping a senior citizen with special needs, here are some resources that are available to your loved one.
First, look into the various federal programs aimed at helping the elderly. Here are some of them:
- Americans with Disabilities Act (ADA) – This is a federal Act that protects the rights of people with disabilities. Many special needs predate old age. There is no better starting hub for federal support about disabilities than this one.
- Medicare – Medicare is health insurance for those who receive Social Security benefits. This covers most medical and hospital care, and covers some prescription drugs and managed care plans.
- Medicaid – Medicaid is a federal health insurance program for the elderly, disabled and blind individuals who have limited resources and low income. This can provide healthcare and prescription drug coverage as well as coverage for nursing homes or in-home care. A special needs adult will qualify in both the senior and the disabled categories.
- Supplemental Security Income (SSI) – SSI is a federal program that provides monthly income for those who are blind or disabled and who have an extremely low income and little-to-no resources. It is also available to people who are 65 and older, with no disability, but who meet financial limitations of the program.
- Supplemental Nutrition Assistance Program (SNAP) – Available for people of any age, SNAP provides money to be used to pay for food. If your loved one is receiving SSI, make less than $3,000 in countable assets – excluding his or her home – and meets the net monthly income limits, then this program may be available to them.
- Section 8 Housing – This sort of assistance is available for low-income households, including the elderly and disabled, in the form of either vouchers or established apartment units.
- National Council for Aging Care – This is a hub for programming and services for seniors, ranging from protecting seniors from elder abuse to long-term care and financial counseling.
- Food and Drug Administration (FDA) – Seniors often have to take many prescription medications, and special needs can only complicate this further. The FDA offers many resources that can help you protect your loved ones from polypharmacy.
Next, look at any state programs that are available to help special needs or elderly adults. Some places to look on the state level include:
- Department of Health and Human Services
- State Medicaid programs
- Department of Family Services
- Department of Aging
- Department of Veterans Affairs
Each state will have its own unique programs to consider. A few states have particularly interesting programs that can be of help. Some of these include:
- State Disability Assistance (Michigan) – Cash assistance to eligible disabled adults age 65 and older.
- Disability Financial Assistance (Ohio) – Cash assistance from the Department of Job and Family Services for disabled individuals age 60 and older.
- Office of Temporary and Disability Assistance (New York) – Programs for low-income, disabled individuals.
- Department of Aging (California) – A particularly progressive department with help for the elderly.
Finally, consider looking for private programs and groups that provide support. You can find these through:
- Local support groups for the disabled
- Local support groups for caregivers
- Local support groups and organizations for the elderly
- Your loved one’s medical team, ranging from PCPs to specialists and therapists
Some examples of these include:
- National Alliance on Mental Illness (NAMI)
- Autism Society
- Alzheimer’s Association
- American Association on Intellectual and Developmental Disabilities
- American Association of People with Disabilities
- American Council of the Blind
- American Foundation for the Blind
- National Association of the Deaf
In addition to these disability-specific organizations, you may also find help from:
- National Council on Independent Living – The National Council on Independent Living is a nonprofit group made up of Centers for Independent Living. These are operated on a state level and work to provide independent living services for disabled individuals, including seniors.
- National Association of States United for Aging and Disabilities – This organization’s mission is to “design, improve, and sustain state systems delivering home and community-based services and support for people who are older or have a disability, and their caregivers.”
Planning Now for Your Special Needs Loved One’s Future
It’s important that those charged with caring for the needs of an older adult take the necessary financial precautions as early as possible to ensure a stable future. Luckily, there are tools that can help preserve the financial and physical health of those with special needs as they age. Here are some of these tools.
The Special Needs Trust
Kristen Lewis Denzinger of the American Bar Association recommends the Special Needs Trust as a tool to help plan for the financial needs of a disabled person. She says:
“One of the biggest concerns voiced by families of persons with disabilities is how best to fund their long-term personal and financial needs in a manner that will secure for them a full – and fulfilling – lifestyle geared to their specific abilities and preferences. Increasingly, lawyers are recommending a flexible and effective option to provide for the immediate and future benefits of disabled persons: the ‘Special Needs Trust.”
A Special Needs Trust will allow you to:
- Put money and resources away for the care of your disabled loved one later in life.
- Protect the individual’s ability to receive need-based government benefits, like Medicaid and SSI.
- Provide money for the extra items that other sources of support don’t provide.
Funds in a Special Needs Trust cannot be used for general income, but they are still quite valuable. According to the Special Needs Alliance, “the purpose of Special Needs Trusts is usually to provide extra, or supplemental, items to the beneficiary – the things that the system, family, and other sources cannot or will not provide.”
While helpful, a Special Needs Trust can be improperly funded. Loved ones need to be careful when giving to the special needs adult. BB&T‘s Wealth Magazine warns:
“In order to maintain eligibility, family members . . . should be made aware of planning and should make gifts to the trust rather than directly to the [beneficiary].”
If you would like to set up a Special Needs Trust, you will need to:
- Find a qualified special needs trust attorney or financial planner.
- File the necessary paperwork to establish the trust and the trustee.
- Ensure family members understand how to utilize the trust.
For further information about a Special Needs Trust, visit:
- Special Needs Answers – What Is a Special Needs Trust?
- Special Needs Answers – What Can My Special Needs Trust Pay For?
- Friendship Circle – The Pros and Cons of a Special Needs Trust
- Special Needs Alliance – Special Needs Trust Defined
Long Term Care Insurance
Another choice is long-term care insurance. According to Autism Speaks:
“Long-term care insurance protects your assets by paying for some or all of your care should you need it (at any age, if the policy is in place). Long-term care insurance protects your retirement income and could play a role in protecting the plans you have put in place that could benefit your child/children too.”
Some of the benefits of long-term care insurance include:
- Peace of mind that long-term care will be covered.
- Less worry about what will happen if your loved one needs extended care.
- You have the ability to pay directly to the facility, protecting any income status necessary for Medicaid and SSI.
However, long-term care insurance is not a perfect solution. AARP’s Allan Roth warns about these potential cons:
- Premium Hikes – As an insured individual ages, premiums may end up getting significantly more expensive.
- Costs of Care – The estimated cost of care may decline as an individual ages, so the out-of-pocket expenses may lower when someone enters extended care.
- Profits – Long term care insurance providers structure their policies so that they make a profit.
- Investments – You may be able to better meet the needs of your loved one by investing the money spent on premiums in a stock portfolio.
If you’re trying to decide about long-term care insurance, consider these resources for more information:
- American Association for Long-Term Care Insurance
- Fast Facts About Long Term Care
- Insurance Information Institute – Long Term Care Insurance
- HIPAA – make sure you’ve gathered all of your parent(s)’ medical documentation ahead of time, and/or obtained their consent to access it
Beyond Financial Planning – Naming a Decision Maker
In addition to planning for the financial needs of your loved one, you will need to consider the fact that many disabled seniors are not able to make decisions, both financial and health decisions, without help. You may need to take legal measures to name a “decision maker” for health and financial decisions. You have several tools available to help with this. Here are some of the tools you can use.
Power of Attorney and Conservatorship
According to NOLO, a power of attorney is a “legal document that gives someone you choose the power to act in your place.” This is a simple definition of something that can be a bit more complex in the case of a disabled adult. Therefore, it is highly recommended that you speak with an attorney.
Financial guru Chris Hogan believes the power of attorney is important part of an estate plan for all older adults. “This document declares who you want to make financial and legal decisions for you if you cannot make them. This is especially important as you age because no one – not even your child – can access your bank account without prior permission,” he says. So, should you need to step in and pay bills for your disabled loved one, you won’t be able to without this document.
Most of the time, an individual will grant power of attorney power before they get to the point that they cannot make decisions for themselves. However, with someone with special needs, you may reach the point that you have to name a decision maker before the individual thinks it is necessary.
According to attorney Philip Feldman, it can be challenging to get power of attorney when the loved one does not want to give it up. In order to get this power, you must have the concession of the individual. Feldman says, “If you’re unable to persuade your [loved one] to do this, you can go to court and get a conservatorship.” Conservatorship gives an individual the power to make decisions for a senior who the courts decide is no longer capable of doing this.
For more information about conservatorship and power of attorney, see:
- AgingCare.com – When Family Doesn’t Have POA, the Effects Can Be Devastating
- A Place for Mom – 5 Misconceptions About a Power of Attorney
- AARP – Legal Matters: Power of Attorney
- Judicial Branch of California: Seniors & Conservatorship
- The Arc – Guardianship and Conservatorship for People with Mental Illness and Seniors
- Nolo.com – Conservatorships and Adult Guardianships
- SeniorLaw.com – Health Care Decision Making for Incapacitated People Who Have Not Signed a Health Care Proxy
- Caring.com – 5 Legal Documents You Need for Your Loved Ones
Healthcare Proxy and Medical-Information Release
A healthcare proxy, according to Kiplinger, is like a power of attorney for healthcare decisions. Consider having your loved one name someone as his or her health care proxy to ensure that you have someone who can make important medical decisions, such as whether or not to put the individual on life support. Similarly, have your loved one sign a medical information release form that gives you permission to access their medical records.
For more information about healthcare proxy and medical information release documents, visit:
- Aging Care – 3 Must-Have Legal Documents for Elderly Healthcare
- PBS.org Caregiver’s Handbook – Important Legal Documents
- New York State – Healthcare Proxy
- The Senior Focus – Do You Need a Health Care Proxy?
Consider the Living Arrangement
In addition to planning for health care and end-of-life situations, it’s crucial to think about living arrangements. Care for a senior is costly, and care for a senior with special needs is even more so.
According to U.S. News and World Report, a private room in a nursing home costs as much as $90,500 a year, or $248 a day. This drops only a little to $81,000 a year or $222 a day for a semi-private room. This is just one example of assisted living costs. Those are staggering numbers. This is why you must plan for the living arrangements of your loved one before the time comes that they need care.
Consider Care at Your Home
One way to lessen the cost of care for your loved one is to provide care at home. According to a research report from the Utah Foundation, the vast majority of seniors want to “age in place.” That means they wish to stay in their own homes and continue living independently. However, for special needs seniors, this may not be a viable alternative. Instead, moving in with loved ones can help preserve independence while providing care as needed. You will need to evaluate whether or not you have the ability to care for the individual’s needs in your home before making this decision.
Caring for a senior loved one in your own home or assisting them with staying in their home is not easy, so you will need to evaluate whether you can do this. Some questions to ask yourself are:
- Can I spend the time necessary to provide an adequate level of care?
- How much intervention does the individual need to stay healthy and happy?
- Can an in-home service help support those areas I can’t tackle?
- Does my work allow me the freedom to take care of my loved one’s needs?
- Can I afford to stop working to become a caregiver?
- Do I have resources for help when I need a break from caregiving?
Don’t forget that you may be able to get some financial help to care for your aging loved one. Adults taking over the role of caregiver can get benefits from:
- Long-term care insurance
- Tax incentives
- Elder care assistance from the workplace
For more information on this, visit:
- U.S. News: Can You Be Paid to Care for Mom and Dad?
- AARP: Can I Get Paid as a Caregiver?
- Caring.com: How to Get Paid for Being a Family Caregiver
While staying home may be preferred, it’s not always possible when special needs seniors need ongoing care and treatment. Assisted living and skilled nursing facilities are often the best options, but these are costly. There are a number of ways to pay for assisted living care, according to Patricia Barry, a writer for the AARP Bulletin who has earned the nickname “Ms. Medicare.” These include:
- Medicaid and Medicare funds
- Special Needs Trust funds
- Long-term care insurance
However, there are some concerns. According to Barry, “Medicare covers [medical services] regardless of whether the enrollees live in a nursing home or in the community, but Medicare does not cover any ‘custodial care’ – that is, the costs of a room, meals and help with daily tasks.”
For those services, the individual must rely on Medicaid, and Medicaid is only available to those whose income is quite low. In order to get Medicaid for your loved one, you will need to get creative with their assets and any financial gifts you choose to give. Barry says, “You can get a lot of information from your state’s health insurance assistance program, which is a public service that provides personal help from trained counselors on all Medicare and Medicaid issues at no charge.”
For more information, see:
- Forbes – How to Pay for Nursing Home Care
- LongTermCare.gov – Costs of Care
- Nolo – When Will Medicaid Pay for a Nursing Home or Assisted Living?
A final option to consider is in-home skilled care. Chris Hawkins, senior living and health writer on SeniorLiving.org, says that home care is increasing, and experts expect more than 1.3 million home health and care aids will be employed in the United States by 2020, a 70 percent increase from 2010. “It’s no wonder seniors choose home health care over stays in a hospital if they are able to,” he says. “The average daily cost of a hospital stay is $6,200, while the average cost of home health care is just $135 per visit.”
- PayingForSeniorCare.com – How to Save Money on Home Care Without Compromising Care Quality
- AgingCare.com – How to Choose Home Care for Elderly Parents
- National Association for Homecare and Hospice – How Do I Select the Right Home Care
When to Start Planning
When should you start planning the care for your loved one with special needs? The best time to plan for their senior years is in childhood – or as soon as the disability occurs. However, this does not always happen. When it comes to helping someone with a disability, the sooner you start planning, the better. Whether your loved one is 50 or 70, today is the day to start making the necessary plans to ease them through those challenging senior years. Surround yourself with financial, health and legal experts, and get the plans in place to protect your loved one in the future.
So how can you get started on your planning? Here are some starter resources to consider:
- My Child Without Limits – Eight Steps to Future Care Planning for a Loved One with Special Needs
- How to Help Your Elderly Loved Ones Plan for the Future
- AARP – A Planning Guide for Families
- Center for American Progress – Real Family Values: Planning for a Future that Ensures Dignity for an Aging Population
- Caring.com – Things You Need to Know About Your Parent’s Finances Before It’s Too Late: A Checklist
- Checklists and Worksheets: Our Aging Parents