So, like I was saying in the video, a lot of things tend to get lumped together under the umbrella of “services for a disabled child.” And that is completely, totally understandable: so many parents know nothing about the world of disability before they are introduced to it by way of their child.

I think the 4 Big Ones are:

1. Money: accessing Social Security Income (SSI), saving money for your disabled child through ABLE accounts, and setting up special needs trust
2.  Tools: understanding and accessing tools for the disability: therapies, healing, medical equipment
3. Support: respite, self-care
4. Community: connecting with disabled adults and other parents in a specific (or the greater) disability community

Let’s talk about each of these key pieces individually.

 

Money for Your Disabled Child

There’s a fun truth that able-bodied parents of disabled kids realize after they have their kids: disability is freaking expensive. It costs to be disabled in the America of here and now. Many people with disabilities call this the “disability tax” – that extra money that we have to pay for just about everything because it’s “special.”

Added to that, there are laws limiting how much money we can make and keep medical benefits, and how exactly we can save money and to what extent.  The learning curve with all of this is huge. Let’s keep it easy here, with some basics.

a. Social Security Income (SSI)

A child with a disability is entitled to SSI if they “have a medical condition or combination of conditions that meets Social Security’s definition of disability for children, and if his or her income and resources fall within the eligibility limits. The amount of the SSI payment is different from state to state because some states add to the SSI payment.” (SSA Benefits for Children with Disabilities)

In other words, if your child has a disability that meets Social Security Administration (SSA) requirements and if your own income falls low enough, your child can receive money from SSI.

After I had my daughter with Down syndrome, she received money from SSI for  a few years.

This was because Down syndrome is an automatically-qualifying disability and we were living off my then-husband’s income of $2,000/month in the San Francisco Bay Area. We easily qualified and the process for applying and receiving was easy: I just went to the SSA office in Oakland, CA, waited a million hours and brought a million verifying papers (bank statements and so forth).

SSA has a pretty great website, and all of their information is on it. If you really like researching things and having a deeper understanding of the system, I highly recommend “The Red Book” (linked at the end of this post).

SSA  also has a handy “starter kit” for parents to apply for SSI for their children (linked below).

b. Saving & The Future for Your Child with a Disability

• ABLE Accounts:

ABLE accounts are set up like college savings accounts – they are tax-free, diverted accounts that can be used for anything disability-related. Depending on the exact account you set up, you can save up to $100,000 for your disabled child, and they can still remain on SSI.

This is huge, a real game-changer for most families. Find out more about it in my post linked here, and visit the ABLE National Resource Center, linked here.

• Special Needs Trusts:

These are trust that are set up specifically to protect your child with a disability, usually after you are gone.

They are usually set up by a lawyer (but don’t have to be), and can be complicated and expensive. They are definitely worth the hassle if you have some money or assets that you want to be sure that your child gets. Here’s a link to the Wikipedia entry for more information on special needs trusts, and read this link from NOLO on how to set up a special needs trust.

2. Tools: Disability Tools, Therapy, Medical Equipment, Healing

A lot of parents run into the “disability tax” here because, HOLY COW! Medical equipment is freaking pricey! It’s all just crazy-expensive. Sometimes I wish our mainstream culture would realize just how pricey those medical-shoes actually are so that they’d be as hip and desirable as the one-of-a-kind celebrity-endorsed Nikes (or whatever brand that’s finding favor).

Here are some ideas for finding ways to both find out about things that might be helpful to your disabled child, and ways to purchase them or have them purchased for your child.

a. Medical Equipment

If you find yourself wondering if you are missing something that your child should have (but you don’t know what it might be because you are still learning about her disability yourself), try:

• Find your parent community:

Facebook: go to Facebook and search for your child’s disability under “groups”. Go through them until you find a parent group for what fits. Ask there.  

Google: search for your child’s disability + parent group. See where that leads and proceed.

Reddit: Another great source for parent communities. 

If you know your child needs medical equipment but you don’t know where to get it and your insurance won’t cover it, try:

• Your state’s center for children with disabilities – google your state + disability + gov, see what comes up. Different disabilities are usually covered under branches which is why you want to figure out what branch your child’s disability is covered under.
• IEP/IPE: see if you can get the equipment through your child’s Individual Education Plan at school; if they are older, try through their IPE (Individual Plan of Employment). I needed new hearing aids once upon a time, and I was able to get them through my IPE.
• Your local business club: approach Rotary, Lion’s, Kiwani’s or similar club to see if they are willing to sponsor your child.
• Check your intersections: look at the other components your child represents: in my case, my daughter is part Vietnamese and is also a French citizen – I would look at local organizations that work with Vietnamese culture and/or French citizens in the US and see if there was a scholarship to apply for to help pay for a medical device or expense. I actually did  get an iPad for her through a local organization that had money for kids with disabilities in the San Francisco Bay Area. ALWAYS LOOK FOR YOUR INTERSECTIONS!!!! Is your child a first-generation American? African-American? Child of a single mom? Look for the intersections, research and apply accordingly.

b. Therapy & Healing

• Follow the same steps as with medical equipment: join groups, ask questions.
• Apply through IEP/IPE, state branches, business clubs and areas of intersections.
• Also: check out my post on how to get free stuff for your child a disability (linked here) and take note of what organizations pay for what.
• I approach places directly when it makes sense and ask if there are scholarships or ways for my child to participate (if it’s out of my budget). I mean, so what if they say, “no”, right? They might say, “yes!” – it’s worth a shot!

3. Support: Self care

Self care isn’t just about pedicures, face masks and a beauty routine. It’s about nurturing yourself so that you can find balance in your life and enjoy mental health and well being on a daily basis.

Parents of children with disabilities often require more support, especially in the beginning as they go through their (often massive) learning curves. Many parents even acquire PTSD through the process of intense, chronic anxiety and stress. Unfortunately our culture does not understand this and there is very little support offered to parents. Nevertheless, here are some ideas:

a. Respite

This is where your state-run branch that serves children with your child’s particular disability provides a trained, qualified person to spend time with your child each week so that you can take a break.

Obviously, this can be fantastic. So, figure out where to apply for this and get the ball rolling – the application process can be time consuming and a royal pain the butt but it’s worth it.

b. Local Organizations

Check out local organizations for your child’s disability. There may be a few and it may be a larger organization that serves multiple disabilities (- here in Hilo, Hawaii,  for example, there is The Arc and Easter Seals, but no specific Down syndrome group).

See if there is parent support through the organizations, either by way of respite, parent groups, etc.

c. Straight-Up Self Care

I have a comprehensive post on what helps with self care (it’s linked here), and a post on what will help with grief – I’m including that here because I think many parents go through grief as they confront their ablism, ablest culture and their own child. The post is linked here.

4. Community

Most parents of children across the disability spectrum realize pretty fast that they need friends who understand what they are going through, and they reach out to others through virtual groups on Facebook, reddit, Google + , and in-person ones through local organizations.

This is absolutely necessary and I can’t emphasize how important this is.

But so too is reaching out to ADULTS with disabilities. 

That is, reaching out to adults from within the same group that your child belongs to, and also to adults from within the greater cross-disability community.

There are many reasons for this, a few of which are:

• Your child will need mentors who absolutely understand their disability, the challenges and the joys, and can help guide him/her
• Your child needs to feel pride in who they are. They need self-esteem that is not exclusive to their disability, but rather, esteem that recognizes the intrinsic part of their disability. In other words, be proud of being d/Deaf, be proud of having Cerebral Palsy, be proud of that extra chromosome. This is who we are; this is who your child is, and, in the words of the song from the Greatest Showman,  teach them to make no apology.
• Learn from the best. Adults with disabilities have been traveling this road for a long time and know a thing or three about the trip.

Where to Find Adults with Disabilities:

• Groups on Facebook: play around with search terms on Facebook to find relevant groups, same goes for Reddit and LinkedIn (does anyone even go on Google+ anymore? If so, try there too!)
• Tune in to Alice’s Disability Visibility Project
• Go through the organizations I list in this post – and reach out, volunteer, connect with them

 

Services for Your Disabled Child: It’s a Mixed Bag

You see what I was saying in the beginning, don’t you? It’s pretty common to kind of lump everything together: therapy, self-care, respite, money…

Let’s try this for now and see how helpful it is for you. If you have questions, please ask them here or on my Facebook page. I would love to help connect you with resources that make sense for you, your child, and your location.

ALL THE LINKS to Get Services for Your Child with a Disability:

Social Security Administration:

• Benefits for Children with Disabilities (PDF, chock-full of information)
• Starter Kit to apply for SSI for your child

Savings and the Future for Your Child with a Disability:

a. ABLE Accounts

ABLE National Resource Center

b. Special Needs Trusts

NOLO: how to set up a special needs trust

Self Care

• Self Care When You Have a Disability (but also applicable for you non-disabled out there!)
• Here’s What Will Help You With Your Grief

Where to Find Disabled Adults

• Great Disability Organizations 
• Disability Visibility Project
• Instagram: subscribe to the hashtags #365dayswithdisability #disabledandcute #disabilitypride – and search for hashtags related to your child’s disability