Giving Care — Part 3
Posted by Gail | Filed under Money & Family
Caregiving is expensive. Forty percent of primary caregivers pay out-of-pocket caregiving expenses of between $100 and $300 a month. But caregiving doesn’t just affect your budget in terms of how much you have to spend. It can really take a whack at your income. Twenty–five per cent of caregivers say that caregiving responsibilities have affected their job performance. Another 25 percent have had to quit work, retire, or change jobs. While the government has acknowledged the impact on our wallets, the steps taken have been small.
In 2004, Employment Insurance started providing up to six weeks of compassionate care benefits for employees who take time off to care for gravely ill family members with a significant risk of death within 26 weeks (6 months). You can get up to 55 percent of your average insured earnings, to a maximum of $413 per week following a two-week waiting period. However, the benefit is taxable and deductions are taken off the top.
Make sure you claim the Caregiver Amount on your tax return if you provide in home care for parents or grandparents who are 65 before the end of the tax year, who live with you. You can also claim the Caregiver Amount if you’re caring family members between the ages of 18 and 65 who are dependant due to mental or physical infirmity.
Don’t be surprised when you have to get involved in your parents’ financial lives. As parents’ physical and mental health becomes more of an issue, caregivers often need to step in.
Find out where they bank and where their investments are held, along with the names of their financial advisors. You don’t need to know what’s in the will, just where the will is. If one isn’t already in place, make sure your care-receivers execute a will and powers of attorney so they don’t lose their ability to name a trusted representative to be in control of their financial and medical affairs. Even if you have joint ownership of assets such as a home with your parent, you won’t be able to make changes until someone is appointed to represent your parent’s interest.
Manage the cash flow. Arrange for automatic payment of expenses such as utility and insurance bills and for direct deposit of pension and benefit checks. Set up a joint account with telephone or on-line banking privileges so you can do a quick check to make sure everything in the account is going smoothly (no overdrafts!).
Get Tax-smart. Many health and age-related expenses can be claimed. Know what they are since certain items can only be claimed if prescribed by a medical practitioner (including doctors, naturopaths and dentists).
By 2010, sixty percent of people over 50 will have a parent living so it’s a good bet that you and at least one parent will be retired at the same time. So, how do you deal with the financial crunch of caring for your loved ones just when your income has stagnated? You might want to consider arming yourself with some Long Term Care (LTC) insurance.
LTC provides coverage for people with a prolonged physical illness, disability or cognitive disorder (such as Alzheimer’s disease) who are no longer able to function independently. This can include care at a nursing home, help at home or care at an assisted living facility such as an adult day care center. Without insurance, these services can hit your wallet hard. A year’s stay in a nursing home averages around $36,000. In-home nursing care visits three times a week, two hours a visit, will run to about $9,500 a year. LTC is meant to defray these costs to avoid depleting your savings.
All LTC policies are not created equal. Some pay benefits to cover a period of stay in a nursing home. Others cover nursing home and home care. Some cover services in adult day care centers or other community facilities. Most companies will not allow the benefits to be used to pay a natural caregiver: your wife, husband or children — anyone related to you; benefits can only be used for professional services. Some companies like Desjardins will not penalize a natural caregiver so that if you must take time off work to look after your dad, his LTC benefits could help you make ends meet while you’re not being paid at work. Shop around!
Benefits are based on an inability to independently perform various activities of daily living (ADLs) including bathing, eating, dressing, toileting, transferring (moving in or out of a chair, wheelchair or bed), and continence. Policies specify an “elimination period,” which can be from 0 to 100 days. Choosing a policy with a zero-day elimination period will cost the most. During the elimination period, you’ll have to pay the cost of care out of your own pocket.
LTC is less expensive the younger and healthier you are. If you have an impairment, you likely won’t get coverage for your lifetime. Assuming you even get coverage, you’ll have to make do with benefits that last somewhere between two and five years. That’s the main reason why you want to buy LTC (or get your parents’ covered) sooner rather than later.
Long-term care policies offer a number of optional provisions such as inflation protection, waiver of premium or discounts when two spouses buy policies at the same time, so shop around.
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I received this letter recently and told the mom who wrote that I’d post it for your comments and guidance. If you can provide advice, please do so… this is where the “community brain” really kicks in:
We have a son who is considered technology dependant. Basically it means that he needs a lot of medical and therapy equipment to help him live his life. We’re talking about expensive stuff – $8000 for a wheelchair, $5300 adjustable bed, $13,000 for a platform lift to get him to his accessible bedroom, $3000 for a bipap (breathing machine), $600 for a seating system, $5000 for a stander, and $29,000 for adaptations for the van. These are just examples of the items that he needs (and they are needs not wants). Can you advise us on how we can incorporate items like these into a budget? When you find out that a piece of equipment or therapy is recommended, you can’t wait until you save up enough. Our savings account does build up and then gets emptied back to zero on a regular basis. Almost nothing is covered by insurance and I am very good at begging service clubs for financial assistance (unfortunately there are a limited number of them to approach). Thanks,
Here was my response:
Oh K, I wish I had some magic for you. I know that working with a disabled child is horrendously expensive, and I would love to be able to give you some insight into what you can do differently, but this is not my area of expertise. You don’t mention where you’re located in the country, but I know there are provincial and federal programs that will help, not just community-based programs. In terms of incorporating your big purchases into your budget, just make sure you’re not overextending yourself to the point where you can’t deal any more.
K wrote again:
Thanks for your response. We live in Winnipeg, MB. E (her son) is a client of Special Family Services (provincial). They do help with certain costs (ex: good nites and wipes), but funding applications are turned down more often than not. E’s formula (he’s tube fed) is provided through Manitoba Home Nutrition and lots of his day to day medical supplies are provided through Winnipeg Regional Health Authority (WRHA). Are the provincial/federal programs that you are aware of different? Oh, E also received $78.36/month from the “new” disabled child assistance program (federal).
Okay, it’s your turn. Do you have any advice for K on how to get more help dealing with her son, E?
July 21, 2009 at 8:46 am
K probably already knows this but PC Children’s Charity helps families with children with disabilities. They provide funding for things like modifying vans, wheelchairs, lifts etc. They collect money in their stores all year long, have different fundraisers about 4 times a year and many employees actually deduct a portion of their paycheque as a dontation to the PCCC. Hope this is helpfull!
July 21, 2009 at 9:52 am
How old is E? If he’s nearing the age of majority, then he can soon start applying for disability monies from the province.
Also, the RDSP is a great way to get cash from the government. If you make under $74 000 a year (I think that’s the number) they will match 2 to 1 what you put in (i.e. if you deposit up to $1500, they will put in an extra $3000). You can’t remove the money until 10 years after you put it in, except in cases (which may be yours) where death is expected within 5 years. Then the money can be used right away.
Do you have an Early Years/Healthy Babies, Healthy Children type program in your area? Or a YMCA/Community centre, where you can apply for special needs grants? I myself have a chronic illness (although not to your son’s degree) and am finding that the “civvie” organizations are just as helpful as the official or special case ones. Use every disabilty E has to get help: if he has low vision related to either his disorder or long-term machine use, contact CNIB. If there’s a question of mental health issues, contact CMHA. Contact national illness groups relating to your son, even ones that just have a “support” presence, because then they can refer your name to industry contributors.
One more thing – how many child tax benefits do you get through the federal government? Did you apply for the Disability Tax Credit for E? I did and received it, and it opened so many more doors for me to receive other tax breaks and funding from the federal and provincial government, not to mention that it automatically qualified me for certain aid programs.
Good luck, wish you the best.
July 21, 2009 at 10:23 am
One of the most efficient ways to find out what programs are available to you is to get to know your provincial and federal government representatives. Go to one of their open office days and ask them what programs and grants might be available to you. Get business cards and follow up regularly with their office. There are dozens of programs that aren’t utilized because people don’t know about them.
Another source of information is your regional health authority, you already have contacts there so leverage those contacts to meet the people who know where the grant money is. Find out when the end of the fiscal year is, that is when some quick deadline programs might come up.
Build a good relationship with your suppliers as well. I used to work in a pharmacy and had several clients who were on programs that covered their supplies like diapers, wipes etc. If your son is young enough to fit into the children’s size diapers or pull-ups you should be able to purchase these items on sales or use a coupon to reduce the unit price stretching the grant money a little further – I used to call my clients when there was a good sale or a good coupon available. If your son wears an adult size make sure you are purchasing the bulk packages as they are significantly cheaper.
I also used to fill in reams of paperwork to apply for government grants for clients, I found that it was best to contact the agency before I sent in the paperwork to see what additional paperwork they would require to expedite the application. For example it may not say on the paperwork that you need a confirmation of the diagnosis and the applicable code (some products are only paid for if the client has a particular condition) from the physician but you will get a letter requesting that information later, delaying your application. I am sure that you are always nice but remember that you catch more flies with honey!
Good luck
July 21, 2009 at 10:25 am
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July 21, 2009 at 11:10 am
I’m from Winnipeg too…you need to have a social! Or two! Get the word out, get friends of friends of friends to come, get friends of friends of friends to donate raffle prizes, etc. I know this would not solve all your $ issues, but it could help a lot!
July 21, 2009 at 11:53 am
Oh K, I wish I had something helpful to say… all I can do is send best wishes and encouragement your way.
As far as the caregiving expenses, thank you Gail for the tips, we aren’t there YET but my MIL will be with us eventually (sooner rather than later).
July 22, 2009 at 4:58 am
Oh K, I wish I had something helpful to say… all I can do is send best wishes and encouragement your way.
As far as the caregiving expenses, thank you Gail for the tips, we aren’t there YET but my MIL will be with us eventually (sooner rather than later).
BTW I love your blog!
July 22, 2009 at 9:41 am
i did some fast googling and found this stuff….
http://www.gov.mb.ca/fs/pwd/css.html – Children’s Special Services
http://residents.gov.mb.ca/reference.html?d=details&program_id=62 – primary caregiver tax credit
http://residents.gov.mb.ca/reference.html?d=details&program_id=33 – support services
http://residents.gov.mb.ca/reference.html?d=details&program_id=91 – PHARMACARE
http://www.servicecanada.gc.ca/eng/lifeevents/caregiver.shtml – federal stuff about being a caregiver
http://www.childrensadvocate.mb.ca/English/index.html – children’s advocate (might be a good place to get info about programs)
http://www.klinic.mb.ca/ – KLINIC (might be a good place to get info)
i hope those help.
July 23, 2009 at 9:12 am
The one piece of advice that I can give K is that these items do not have to be purchased new. A lot of caregivers feel that they are doing their loved ones a disservice if they provide them with used equipment. This is not the case at all. There is so much barely used medical equipment out there just sitting, it is sad! Insurance plans only cover new equipment so most people don’t even consider using secondhand.
Items like seating systems, wheelchairs, beds, standers are out there sitting unused in warehouses and hospital storage facilities. They would only likely require small modifications to make them appropriate for your child. If you find out an item is not going to be covered by insurance start calling around to hospitals, nursing homes, rehab facilities and even medical equipment suppliers – ask about purchasing used equipment. You will be surprised that you may get offered items for free.
Before using any used equipment you should make sure it is cleaned well, top to bottom and have it inspected. Most medical equipment suppliers will be able to refer you to a technician that specializes in a particular type of equipment. There will be a fee for this. There may also be a fee to make minor repairs and modifications. If you are paying for a piece of equipment it may be useful to have a technician inspect it before you purchase it.
Start asking health practitioners. Both my father and I work in health care. I know that on many occasions my father had gotten free wheelchairs (custom fitted by combining barely used components selected from a warehouse full of chairs that may have been sat in 3 or 4 times) for people in need. I also know that he has gotten adjustable hospital beds for people in need because they were discarded by the hospital during a renovation. During a 3 year stint in a rehab facility in a small town we were gifted 2 standing machines (retail for about $5000) from people who were former clients who no longer required them. We then gifted them to people who could use them in their homes.
As you can tell I am pretty passionate about this. It disgusts me to see the amount of medical equipment that goes to waste because it is no longer “new”. Then to work every day with people who need that very same equipment but cannot afford it – and it is sitting unused in a storage room down the hall.
July 23, 2009 at 9:16 am
i thought of another site….http://www.smd.mb.ca/ (society for manitobans with disabilities)