According to the 2018 Census data, approximately 85 million people are living with disabilities in the United States. The disabilities include physical limitation, mental illness, or severe cognitive impairment.
If you, or your adult child, are among those that are impacted, then you may know all too well that people with disabilities face some unique challenges on top of their physical or cognitive limitations.
Although there are so many disabled adults living among us, people with disabilities are far more likely to receive a lower quality of medical care, including preventive care like wellness visits and health screenings.
Disabled adults are also more likely to have higher out-of-pocket medical care expenses, even though they’re also at a higher risk of living under the federal poverty level.
Then there are the increased odds of serious illness.
A study conducted by the Harvard T.H. Chan School of Public Health, the New York Times, and the Commonwealth Fund looked at the correlation between severe illness and disability. They defined anyone with a multi-year physical or mental health condition that prevented them from participating in school, work, or other activities.
The study found that adults living with a disability are more likely to experience serious illness than those without disabilities. And those with a severe health condition were also more likely to have a disability than those without serious health challenges.
Common barriers faced by disabled adults
For disabled adults, it’s not only the health challenges that they have to face, and the financial burden that comes with them. But they also have to deal with various barriers to regular participation in society.
The World Health Organization (WHO) defines a barrier as more than just physical. Barriers can be factors in a person’s environment, which through either their presence or absence, limit function, and create disability.
Barriers can include lack of accessibility to physical environments, lack of assistive technology to make space accessible to those with disabilities, as well as things like negative attitudes of others towards disabled adults.
When you combine societal barriers, along with health and financial issues, life as a disabled adult can be challenging.
But if you’re a parent living with your adult child with a disability, there are ways in which you can help them to improve their quality of life. There are also programs available at the state and federal level to assist you with resources to care for your disabled adult.
How you can help your disabled adult child
When we think of caring for a family member with a disability, we imagine it would be our elderly parents and not our children.
But if you’re among millions of Americans who are caring for a loved one with disabilities above the age of 18, you may face some unique challenges and worries.
And as your child grows older, the financial worries often get worse. Until a certain age, their meets are often met by the school system. Schools have to adjust their services to meet the needs of those with a disability or cover the cost of those services elsewhere.
But as your child grows older and leaves the school system, they often lose access to the services that they had become accustomed to.
As a parent, you might be worried about your child’s access to transportation, independence, social interactions, and recreation.
You may also have concerns about the long term options for your child’s care. Almost two-thirds of parents with a disabled child say that they don’t have a lifelong care plan in place for their adult children with disabilities. Some parents hope that the other siblings would step in to provide care, but that may not always be a feasible option, depending on what’s going on in the sibling’s lives.
Of course, you would do anything within your power to provide the best life possible for your child. But you also have to find ways to manage the resources that are available to you, whether that’s directly from you, or it’s coming from state or federal sources.
If you can’t afford private services, your child might be at risk of losing access to critical services that are explicitly catered to disabled adults, like training, counseling, and healthcare.
With the various challenges in mind, it becomes vital for you to be aware of all the help are resources that might be available to you as a parent caring for a disabled adult.
Below, we’ll look at what resources are available to you as a parent caring for a disabled child, both from the federal government and the state of New York.
But first, let’s talk about a few things to be mindful of when you’re caring for your disabled adult child, or really, any person living with a disability.
How to treat a disabled loved one you’re caring for
Despite our best intentions, and sometimes because of our desire to do everything we can to help our loved ones, we may end up overlooking the entire picture of how we are treating the person we are caring for. Ideally, we want to help them in every way we can, and at the same time, treat them as the unique individuals they are.
Here are a few helpful tips to be mindful of when you’re caring for an adult living with a disability.
Your loved one is a person not defined by disability
Whenever possible, try to remind yourself that your loved one is not defined by his or her disability. It is something they live with, but it does not make them who they are any more than their height or eye color.
Just like any other person, it is your child’s personality, ambitions, education, skills, etc., that make them who they are. Their disability is just one aspect of their life experience.
Now, of course, you already know all of this. But it’s worth a mention because when we get caught up in the day-to-day details of providing care, we may temporarily lose sight of the bigger picture.
The labels serve a purpose, but don’t let them get to you
Going along with the point above, the labels that are put on our loved ones for their disability can be frustrating and disheartening.
You know your child for all the things that make him or her who they are, and when someone tries to label them as the “kid with ADHD”, it can hurt.
But remember, the labels are terms that serve a purpose. They help you find relevant information, and to find the right people and resources who can care for your child.
But after it serves its purpose, you can put the labels aside and remember that a disability doesn’t change who your child is and that you don’t have to let the labels get to you.
Learn all you can about your loved one’s disability
As your child or loved one grows out of the school system, and it becomes more of your responsibility to provide care for them, it would be beneficial for you to learn as much as possible about the disability that your child is dealing with.
You may want to learn about how their disability affects the way they interact, learn, move, and more. You can also find information on what kind of services and alternative treatments might help with improving their quality of life.
The vital thing to remember when searching for information (most likely online) in 2020 is that the internet is a powerful tool, both for the positive and negative. You’ll find incredibly valuable and even life-changing information online, but you can also find false and made-up information that can be dangerous.
The point being, if something online seems relevant, make a note and be sure to check with credible sources (like your child’s doctor) before you act on them.
At the end of the day, you do know best
With all the new information coming your way, at the end of the day, you have to remember that no one knows your child better than you.
So, take in all the information, learn as much as you can, but if something doesn’t seem like a natural fit for your loved one, you can move on to the next piece of information.
You don’t have to do this alone
It can be overwhelming when you realize that you’re the person that’s now responsible for providing care for your disabled child.
Maybe you don’t know anything about caring for disabled adults, especially if they are young and have to progress towards pursuing their career, hobbies, and relationships.
You might be scared that you won’t do a good enough job, and that will negatively impact your child’s life.
But the good news is that you don’t have to go through it alone. There’s help available for you, both financially and otherwise.
The remainder of this article will mostly focus on the financial help that you can access. But remember that there are also other kinds of support.
Countless people have most likely been through what you’re facing. They had the same doubts, similar financial challenges, and they didn’t know where to turn. Now, they can be your greatest resource as you navigate through this brand new territory.
All you need to do is connect with the right people that can provide you guidance and support. Check within your local community to see if anyone knows of someone else that might be able to assist you. Otherwise, look for online groups and forums where people are sharing information on disability topics that might be relevant to you. ,
What benefits are available for disabled adults living with their parents?
There are both federal and state benefits programs that are designed for families just like yours. They are there to support disabled adults living with parents. Some benefits might go directly to the disabled adult, while others may go to you, the caretaker, to assist in how you provide care.
Federal disability programs
Two primary federal programs provide benefits for disabled adults. Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI).
Social Security Disability Insurance (SSDI)
Social Security Disability Insurance (SSDI) is a Federal disability income program for adults who used to work before, but are no longer able to work due to their disability.
The benefits are funded by the social security tax that everyone pays into the system from their paychecks. So, if your child worked before his or her disability, they would be automatically eligible.
Childhood Disability Benefits (CDB)
But even if your adult child never worked before, they might still qualify for SSDI. Their eligibility for benefits would depend on your earnings (or their parents or guardians).
In this case, the benefits would be funded by the social security tax that you’ve been paying into the system.
This benefit is known as Disabled Adult Children (DAC) benefits, or the Childhood Disability Benefits (CDB).
If all these terms are beginning to get confusing, here’s the gist of it.
There’s assistance available at the federal level for disabled adults who worked before their disability. They may also be eligible through you if they have never worked through CDB.
How does CDB work?
CDB is paid as a monthly cash payment directly to the disabled adult child based on the social security earnings record of their parent.
The parent’s primary insurance amount (PIA) determines the child’s benefit in the following way.
If they are going to go through your disability insurance, then they’d only receive half the benefits as the primary recipient. So, they’d get half the amount that you would get if you were the one with the disability.
If they are going through the PIA of a deceased parent, then they’d get three-fourth the amount that the parent would get.
If both parents are retired, deceased, or disabled, then the child would get benefits based on whichever criteria provides them the greater monthly amount.
What are the eligibility requirements for Childhood Disability Benefits (CDB)?
To be eligible for SSDI, the disabled adult must meet the criteria for disability according to the social security administration (SSA), which is to have the ability to engage in “substantial gainful activity”.
A disabled adult child is entitled to CDB only if the following criteria are met.
● You have filed a CDB application on your child’s behalf (more below)
● The child meets the definition of “disabled” under SSDI guidelines
● The child is above 18 years of age
● The child has a disability that began before the age of 22
● The parent is eligible for social security insurance or retirement insurance, or deceased
If your disabled loved one is eligible, they will be notified by the SSA about the details of their benefits.
Supplemental Security Income (SSI)
If SSDI is not an option based on your child’s or your own work and social security insurance history, then Supplemental Security Income (SSI) might be an alternative.
The benefits of SSI are dependent on your child’s income and assets, and the program is designed to support low-income individuals with a disability.
Just like SSDI, to be eligible once has to meet the social security administration’s (SSA) criteria for disabled, which is that one has to be unable to engage in substantially gainful activity.
Eligibility requirements for Supplemental Security Income (SSI)
To qualify, the disabled adult must have less than $2,000 in assets if they’re single, and less than $3,000 as a couple.
The SSA counts any major assets like stocks, land, bonds, etc., towards their asset limits when it comes to their eligibility.
The income limit is a bit more convoluted than you may expect.
The SSA counts any “in-kind” resources towards the income limit. So, if your disabled child receives free shelter, food, or gifts from friends, those things would all count towards their income limit.
Taking everything into account, a disabled adult’s income may not exceed the federal benefit rate (FBR), which is $783 per month for an individual and $1,175 per month for a couple in 2020.
Not all income is countable, and the SSA excludes part of your income from the calculation to encourage you to work if that’s an option.
For detailed information on how to calculate your income and eligibility to receive SSI, check out their website.
How to apply for federal disability benefits in NY
Your loved one can either apply for Social Security Disability Insurance (SSDI) benefits either in person or online.
Apply online for SSDI
To apply online, visit complete the online application form.
For a checklist of required documents and information to complete the online application, visit the SSA’s checklist for online Adult Disability Application.
For more guidance on the process, you can call the SSA at 1-800-772-1213 from 7 a.m. to 7 p.m. Monday through Friday, or visit the NY state’s federal disability benefits information page.
Apply for SSDI on the phone or in-person in NY
Apply by phone: Call SSA at 1-800-772-1213 from 7 a.m. to 7 p.m. Monday through Friday.
Apply in person: Visit your local Social Security office. (Call first to make an appointment.)
Apply for Supplemental Security Income (SSI)
Visit the SSI website for detailed information about SSI and how to apply.
CDPAP for disabled adults living with parents
CDPAP is a program through the New York State Medicaid that provides financial assistance to people with disabilities that need help with activities of daily living.
So, if your adult child has a disability, he or she may hire a care provider of their choice, and the caregiver would get paid through CDPAP, which is funded by NY Medicaid.
The caregiver can assist with tasks like bathing, grooming, housework, transportation, and various other daily living tasks that the care recipient may need help with.
As a disabled adult, your child can hire their siblings or parents to be their caregivers.
Children aged 21 or older can choose their parents to be their paid caregiver (CDPAP). Children younger than 21 cannot choose their parents to be their paid caregiver.
And the fact that CDPAP compensates the care provider makes it financially feasible for many family members to stay home and care for their loved ones.
One of the benefits of home care through CDPAP is that you, as the guardian of the disabled adult, can direct care for them even if you happen to be the care provider.
Here are the requirements to be eligible for CDPAP:
● The recipient of CDPAP benefits must have Medicaid
● Your child must require assistance with daily living tasks like bathing, grooming, meals, etc.
● He or she must have a stable medical condition or disability
● The disabled adult must have the ability to direct care, or in this case, have a designated representative (you) who can direct care.
For more information including how to apply, check out our detailed page here.
Final thoughts on caring for a disabled adult as a parent
As we discussed, caring for a disabled adult as a parent can be challenging.
On one hand, it can be rewarding in the sense that you get to provide care for someone you love so deeply. On the other hand, it can become a bit overwhelming.
You have to manage all the resources that are available to you and your disabled adult, while at the same time also remaining mindful of the mental and emotional aspects. Not to mention, your own worry and stress about the long term care plan for your child.
So, it becomes important that you seek assistance when you need it. Whether that is through your local community or financial support through the federal disability insurance programs.
And if you’re living in the state of NY, and your child is eligible for Medicaid (or already has Medicaid), consider whether home care through CDPAP is right for your family.