SSI vs SSDI - Trying to figure it all out!

(picture from SSA) There was a meeting not to long ago regarding work and SSI & SSDI payments. Since Will collects SSI and is in a day program that tries to find jobs for their clients, like Will, I thought it would be good to attend. They started off by stating that a lot of people collecting do not like to try to work because they feel that they will lose their monthly payments and cannot survive on a part time income. The meeting was to dismiss those thoughts and explain how the two work together. The following a a quick overview - there is a lot to this so please check in with you local office for further information.

First of all let's find out what the difference is between the two. As the Social Security Administration states, SSI (Supplemental Security Income) is 'a program pays benefits to disabled adults and children who have limited income and resources. SSI benefits also are payable to people 65 and older without disabilities who meet the financial limits. People who have worked long enough may also be able to receive Social Security disability or retirement benefits as well as SSI'. SSDI pays benefits to you and certain members of your family if you are "insured," meaning that you worked long enough and paid Social Security taxes. You have to apply to the Social Security Administration for both - check with your child's social worker or teacher to see if there is someone in the system who can help you do this. As Will went through the transition process in high school we were given a social worker who helped us do the forms. Monthly income gets determined through this process. Find out also, as an aside, if you also get medical benefits with the plan, like Medicare or Medicaid.

Some of the myths of what holds people back from working: it will cause my SSI payments to stop - payments may be reduced or suspended but many people continue to receive payments while working. SSA uses a formula to calculate earnings and more than half of person's gross monthly wages are excluded from calculation. There are two exclusions = SSA does not count the first $20 of a person's monthly unearned income - the balance is deducted from earned income. SSA does not count $65 of a person's earned income and half of any remaining income. There is another exclusion if needed - Impairment Related Work Expenses which covers the cost of items and services that are related to your impairment and need for work if you pay for these out-of-pocket and not reimbursed another way. These have to be approved by SSA.

As the meeting went on, the coordinator gave us examples of what happens with income as people find jobs. The following information is from our state, check with your office for your calculations but at least you will have an example. Here is an example of how SSI might work: let's say "Michaela' gets her maximum SSI payment of $733.00 plus from the federal government plus her state $39.92 = $772.92 for the month. Now she gets a job at a local store and earns $800.00 gross for the month. You take the $800.00 minus $85.00 (general and earned income exclusions) = $715.00. You divide this by 2 (2nd part of the earned income exclusion) = $357.50 of countable earned income. Now take her original $733.00 (from the government) plus the $357.50 plus $39.92 (state) plus $800.00 (gross wages) = $1215.42 total income for the month. So instead of just getting $772.92 for the month, 'Michaela' can earn $1215.42, a difference of $442.50 - that she can pocket. There are other deductions that can be taken too: the Impairment Related Work Expenses mentioned above and Blind Related Work Expenses which can cover transportation, service animal expenses, etc.


SSDI is a little different since this allows for trial work periods - 9 months, substantial gainful activity - significant physical or mental work of both & work done for pay or profit, and 36 months after the Trial Work Period comes the Extended Period of Eligibility - which is a safety net for your SSDI payments.


Talk to your local SSA office or social worker to discuss which is the better way to go. They can help you figure how each will impact you financially. This is just a quick overview so please take the time to speak with an SSA staff person or social worker.

Some thoughts for the end of the year.

End of Year Thoughts:

The end of the year, as we look toward a new year, time to assess what the year has brought us: what happened and what we did about it as well as what we need to do again or change in the upcoming one. Our family situations change, health needs change (sometimes even mental health needs), legal responsibilities change. Maybe it is time to talk to a legal professional.

If you choose to speak with an attorney, make sure you find one who is versed in the type of legal issues you need help with: elder care or special needs child, healthcare Power of Attorney or Social Security -- you get the picture.

On ElderCarelink there is a page on the link - 'Ask the Expert Elder Law Page'. The article shows things to discuss (some of these pertain to both categories of those we care for):

*estate planning
*Medicare/Medicaid
*elder abuse
*age discrimination
*guardianship

As I mentioned, some of the above can pertain to our special needs children. You may want to check out the U.S. Department of Education site and see if anything can help. Laws vary by state but you may see something there that can help. Talk to their teachers too - they can put you in the right direction.

Most of all remember - as I remember being told when I was growing up: 'the only stupid question is the one not asked'.

Ask for Help:

Short and Sweet -- As we all run around preparing for Christmas, Hanukkah, or any other holiday you may celebrate, anyone will tell you - make sure you take time for yourself, care for YOUR emotional and physical well-being. You can't help others if you are not feeling well. ElderCarelink offers 2 ways to help reduce the stress, which I am sure everyone is aware of.

*Hire in-home care to help with transportation, meals, housekeeping, companionship, and personal care.

*Adult care services so your elderly parents too can stay active and be with their peers.

Simple and easy solutions that caretakers should take advantage of. Don't feel bad about wanting to take time for yourself to go to a party or shopping or get your hair done or out for lunch with friends you haven't seen for awhile. You know what?? Sometimes your loved one enjoys time doing something different with someone else, talking about the 'old days', remembering 'the big band era', or what their family used to eat during this time of year -- all the stories WE have heard so many times. It's different with others - a new audience, so to speak. It can be a better thing all the way around for everyone involved.

In a sense, this can also go for help with your special needs child. Use respite care to step in if you need to go out. Depending on the child, he/she might not like all the hustle and bustle and loudness of shopping and parties. Respite care through a variety of agencies can help. There may be teachers or teacher assistants who can help too. I know some of Willie's teacher assistants do this. When mom passed away, Willie's Special Olympics coach stepped in to watch Willie at the funeral home during the wake hours. We wanted him nearby with the family but knew he wouldn't sit or stay still for a long time; so his coach graciously stepped in to stay with him and wander or go out to the car for a time, go to the bathroom -- whatever he wanted to do, It was such a GREAT HELP. I can tell you - use your resources; the guilty feeling goes away in a short time!!

Competitors Joining Forces for the Patient's Needs.

Reading the lastest issue of RI Small Business Journal, I found an article about a firm called 'Capital Home Care Network Inc' (CHCN) started in 1996 by 3 entrepreneurs who are also competitors with similar services and businesses they own. They realize that there is a group of residents, 18 years and older, that falls through the cracks with minimal or no support with unforseen health issues and decided it would be in everyone's interest for them to band together. These 3 people also want to make sure the public knows their healthcare options making sure they know they have a voice in what provider they choose.
The network is comprised of: Medicare Certified Home Health Agency; licensed Home Care providers; a provider of Private Duty Nursing; an intermediary for Emergency Response Systems. Skill sets offered: skilled nursing; certified nursing assistants in the home; progressive rehabilitation services, specialty wound management, Occupational & Speech therapy, medical Social Work, emergency response.
The article states that the service CHCN provides will help communication between multiple providers for different services. If a patient has a healthcare provider they prefer, the company will offer another service needed and the patient can keep who they like.
Capital will review a patient's Medicare, Medicaid, and whatever other plan they have. CHCN wants to do what they can to avoid rehospitalization. "Their company looks beyond the immediate issue and into the patient's future to create a comprehensive plan for the long term. They have developed a superior process to take care of chronic patient's at home who need care, but cannot afford it or cannot manage it themselves. Our ability to provide care across insurance lines is an incredible asset that allows us the service capacity to meet patients needs."
It also states that Capital has strong relationships with hospitals, sub-acutes (skilled nursing facilities with rehab units), physician practices, community resources, to name a few. As one of the developers says, "Capital works with you, your doctor, and caregivers to obtain care and maximize your wellness". Priority #1 is the patient. They must be doing something right since the company has grown 182% over the past 8 years. Congratulations!!!

Home page for CHCN click here.
Care model click here.
Charter and mission statement click here.

Tips from 'Modern Senior' about how to stay home longer.

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(picture from Modern Senior website). I was reading a posting from 'Modern Senior' website regarding how to stay home longer, in other words - how to avoid going to a nursing home and live in your own home. According to the article, 'aging in place can have a lot of mental and emotional benefits. One survey showed that the biggest fear among seniors was loss of independence followed second by the fear of having to move into a nursing home. It may come as a surprise that the fear of death came in last with only 3% reporting that it was their biggest fear. Having to leave your home can have a huge emotional toll that ultimately serves as a catalyst to other health problems. Aging in place can actually increase quality of life and longevity.'
The cost of going to a nursing home continues to rise. You need to check with your medical plans to see if and how much they cover. How does Medicare or Medicaid figure in? Best plan is to plan ahead, plan logistically, to avoid the cost.
Mobility, or lack thereof, tends to be the number one problem BUT there are solutions that can help for a period of time:
** One is a stair lift to help with stairs and avoid falls. There are a few different companies that sell them so you can check on what they offer.
** Second is a lift chair which is similar to a recliner that lifts someone up to a standing position and safely gets you seated without assistance.
** Three is a walk in tub or shower (add grab bars) and you can pretty much bathe yourself.

(pictures from my mother's remodel)
. Grab bars at the door can help get people in and out of the house.

Medical alert systems can be a comfort to elderly parents; my mom liked hers and it worked great when we needed it. I can attest to the distance it covers since one day, she drove away with it on & was about a mile down the street when she accidentally activated it. The company called me & 911. We all arrived together and NO MOM!! We were a little nervous, when I noticed her car was not there. So I called her cell phone and she told me she was down the road getting gas for her car. It was a good thing the EMTs and firefighters had a sense of humor!! While on this subject - - you may want to get a lock box (find a somewhat not-so-visible place for it) and keep an extra key in it and let 911 dispatch have the code number (they only give it out when there is a call). Mom was not too enthused about it but the way I figured it, it was better than fire fighters knocking down her door or breaking windows to get in, if I don't get there first and she could not make it to the door.
There are other ways to help get the home in shape for someone who may want to think ahead. See 'Preventing Falls' on Caring for Elderly Parents.
Also from 'A Place for Mom', there are some caregiver apps that can help.

Checking in on Part D Prescriptions.

If your elderly parent(s) have a Medicare Part D plan, now that we are halfway through the yea, you may want to check on how they are doing with it. Make sure they are getting the discounts they are entitled to. Read on ....

Cost to Caregivers Relative to Dementia Patients.

I found an article on the "A Place for Mom" website describing what it costs caregivers and/or families in monies, caring for those with dementia. They have facts and figures from the Alzheimer's Association from 2012. I found it amazing that 1 in 3 seniors die with some form of dementia. This write-up has so much information that I think it best if I copy it here.

"Alzheimer’s disease and other forms of dementia have a devastating impact not only on the health of older adults, but also on the well-being of caregivers—and on the government programs tasked with shouldering much of the cost burden. In 2013, the total cost of caring for Americans with Alzheimer’s is expected to rise to $203 billion, about two-thirds of which is accounted for by Medicare and Medicaid. And that’s just the monetary cost. The non-fiscal impact on families and caregivers is just as staggering, taking its toll on physical and emotional health. We took an in-depth look at the Alzheimer’s Association’s latest annual report, 2013 Alzheimer’s Disease Facts and Figures, and below is a summary of the major facts everyone should know about the current state of Alzheimer’s and dementia in America.

How Many Americans Have Alzheimer’s Disease?

Alzheimer’s disease is the most common type of dementia, but other conditions such as frontotemporal lobe degeneration and Parkinson’s disease can also cause dementia. In 2013, 5.2 million Americans are estimated to have Alzheimer’s disease, 5 million of whom are aged 65 or older. That adds up to 11 percent of adults 65 and older, and 32 percent of people 85 and older who have the disease. The overall numbers for dementia are more difficult to pinpoint, but the Aging, Demographics, and Memory Study (ADAMS) estimates that 13.9 percent of Americans over age 71 have dementia.

The incidence of Alzheimer’s increases dramatically with age, and the overall numbers are expected to rise due to the large baby boomer population reaching age 65. There are a few complicating factors to these numbers, though. The major problem is that, currently, Alzheimer’s disease is under-diagnosed. As many as half of the 5.2 million people with the disease may not know they have it. However, new criteria for Alzheimer’s diagnosis were adopted in 2011, including criteria for detecting Alzheimer’s in the preclinical stage using biomarker tests and other cutting-edge science.

How Many People Die of Alzheimer’s Disease?

Deaths from other major causes have been decreasing, but deaths from AD are on the rise. Alzheimer’s disease is the 6th leading cause of death in America, and the 5th leading cause of death in seniors age 65 and older. But it’s very hard to pinpoint the exact number of deaths from Alzheimer’s. Currently, the CDC only counts those for whom Alzheimer’s is listed as the primary cause of death. However, if someone with Alzheimer’s dies from an acute condition such as pneumonia or malnutrition—conditions that may be a direct result of Alzheimer’s—they may not be included in the tally of AD deaths.

For instance, in 2010, the most recent year for which data is available, 83,494 people died from Alzheimer’s, but approximately 400,000 people died with Alzheimer’s. Also, having Alzheimer’s dramatically increases the likelihood of death, regardless of the recorded cause: 61 percent of people with AD are expected to die before age 80, compared to 30 percent of those unaffected.

A Portrait of Alzheimer’s Caregivers

80 percent of caregivers for those with Alzheimer’s or dementia are unpaid caregivers, usually family members—that translates to more than 15 million people. 62 percent of those are women, and nearly half are taking care of a parent. Caregivers of people with dementia usually assist more extensively than other types of caregivers, helping with mobility, feeding and toileting as well as dealing with behavioral problems associated with dementia. On average, each caregiver provides 21.9 hours of unpaid care per week, for an estimated economic value of $216.4 billion. Many caregivers suffer from high emotional stress, as well as financial strain, job stress and other difficulties, as a direct result of caregiving.

In this year’s Alzheimer’s Association report, special focus was placed on long-distance caregiving. For caregivers of someone with dementia who was 50 years of age or older, about 15% of those must travel an hour or more to reach the care recipient. About one in five long-distance caregivers is a primary caregiver, helping with the same activities of daily life that local caregivers do. However, long-distance caregivers face more pronounced difficulties with coordinating care, communicating with providers and other family members, and handling care expenses, among other things.

The Cost of Dementia Care in America

The number of seniors with dementia is projected to increase over the coming years, so it’s not much of a surprise that the overall amount spent on care is expected to balloon, too. The aggregate cost of care for people with Alzheimer’s is estimated at $203 billion for 2013; Medicare and Medicaid account for $142 billion (about 70 percent) of that amount, while out-of-pocket expenses account for $34 billion.

Per person, that amounts to an average of $45,657 per year of health care dollars spent on dementia sufferers, compared to $14,452 per year for those without dementia. Dementia’s cost can be even higher if the person is in a residential facility. Scary as those numbers may be, experts estimate the overall spending on people with Alzheimer’s or dementia to rise to $1.2 trillion in 2050. The good news is, with accurate knowledge of the situation regarding dementia in America, government agencies, health care providers, caregivers and families will be better able to plan for a future in which the growing number of people with Alzheimer’s can be quickly diagnosed and treated with all the tools currently at our disposal."

Government Benefits You May Not Be Aware Of.

I was reading through an email sent to me by Caring.com, a site I just found out about this past weekend that deals with caregivers and seniors. In the site I saw a post called "9 Government Benefits You Might Be Missing Out On" It is under Government Benefits. It describes different areas of help your elderly parent or family member may be able to take advantage of. Here is a quick review of the 9 (take a look at the site for more information):

1. Social security payments to dependents: these are payments made to the spouse of the deceased or any children or stepchildren under 18 years of age. The widowed spouse must be over 62 or over 50 if disabled. If this spouse is caring for children under 16, then age does not matter. Grandchildren might also collect. Check with your local Social Security Office.

2. Shoes for diabetics: anyone who is diabetic and eligible for Medicare Part B and meet your yearly deductible.Then Medicare can pay for possibly 80% of the cost. You get custom made shoes and 3 pairs of inserts. You need to be under a doctor's care for diabetes management and suffering from serious foot problems. You will need prescription from your doctor or podiatrist. Please talk to you doctor or podiatrist to see if you qualify.

3. Free rides: for people with mobility problems and seniors who need transportation to appointments and activities. These may vary but usually it is a van that brings you door-to-door; you need to schedule it - need to make an appointment. Local aging service agencies will be able to give you more information.

4. Low-interest loans for small businesses affected by disaster: any business or non-profit damaged in a disaster, up to $2 million in low-interest, long-term loans. A lot of seniors still work, maybe still own a business; contact the Small Business Administration.

5. Home or car modifications for veterans: veterans with a disability can look into this. This is for a loan or loan guarantee to buy a house or car, or make modifications to an existing house or car. If you have a veteran family member take a look at the Veterans Benefits.

6. Free credit check: open to everyone. Just make sure you go to the federally authorize website to make sure you can take advantage of all 3 of the major reporting companies.

7. Therapy for Alzheimer's patients: for patient's with Alzheimer's or other forms of dementia covered under Medicare Part B. You may be able to get out-patient occupational, speech, and/or physical therapy. Your doctor needs to prescribe therapy and use a Medicare certified therapist. If you have Medicare Part C, Medicare Advantage might help.

8. Burial benefits for veterans: for veteran's approved for eligibility through Veteran's Administration. You get a headstone, grave site and maybe a burial allowance. This is normally in a national or state veteran's cemetery. The VA may help with burial in a private cemetery - just check.

9. Help with household chores: for those over 60 and disabled - you may get home, yard, and moving help. Check with a local service Agency on Aging to get the details. There may be a fee involved.

New Websites to Look At.

Sunday's paper had its Parade Magazine; in it was a short list of websites that would be helpful to a variety of people with a variety of medical situations. The article was in the 'Stay Healthy' section. There were 2 that I visited quickly to get an overview of and they looked good.


One was MyAutismTeam.com for parents of children with autism. The flagship social network site of MyHealthTeams, MyAutismTeam .com helps users connect with similar parents and add them to their "team" (much like following someone on Twitter). Members can also search among more than 30,000 autism specialists and autism-friendly businesses in their local community—all recommended by other members.

The second one was Caring.com for adults caring for aging parents, spouses, or other loved ones with debilitating diseases. In 2006, when co-founder Andy Cohen was caring for his mom (who had lung cancer), he couldn't find information online on how to hire a nurse, navigate Medicare, or answer any of the hundreds of other questions he had. Now, nearly 2 million people visit his website each month for support and local senior care referrals.

Take a look to see if they can provide any additional resources to help with your current situation.