Wednesday, August 19, 2015

Long Term Care for a Special Needs Child

The handsome young guy in the photo is my son.  He is twenty-three years old, lives at home with us, is handy for getting things off top shelves, does school pick-up for his younger sister, works in food service at the Superdome and is autistic.  In many ways he is twenty-three going on fifteen.  He is perfectly happy with his part-time job.  He has no desire to move out.  He'd rather spend his money on video games than on car repair bills (but then,so would I and I don't play video games).  We don't know what the future holds for him, but realistically, he will be economically dependent on us for the foreseeable future, if not forever.  As we prepare financially for retirement, he has to be considered.


As parents reach their fifties and sixties and retirement becomes more than a far-off dream, special needs children age out of the school system, which up to that time, has been a primary provider of services for many children.  One thing parents quickly learn is that while school-aged children are entitled to services, adults are eligible for them.  The difference is that schools are required to provide needed services; services to adults are provided if there is enough money.  Waiting lists are the rule rather than the exception.  The main take-away from this is that when your child turns eighteen you need to register him/her with all the appropriate agencies, whether or not you need services at that time. Failing to do this probably cost me close to $10,000 for a program that would have been paid for had we gotten on the list a few months earlier than we did.  

Financial Preparations

Social Security and Other Government Programs

Social Security is the foundation upon which other services are built.  Low-income families of special needs children can get payments from SSI while the children are still minors.  Once the child reaches eighteen, his/her eligibility is based on the handicapping condition and its effects on life.  Right now, SSI payments to single adults who were disabled prior to the age of majority are about $700 per month. 


According to the Social Security Administration, in order to qualify for SSI, a young adults must  "have a medically determinable physical or mental impairment (including an emotional or learning problem) which:

  • results in the inability to do any substantial gainful activity; and
  • can be expected to result in death; or
  • has lasted or can be expected to last for a continuous period of not less than 12 months."
SSI is a means-tested program.  In short, if your child has assets exceeding $2,000, she/he does not qualify for SSI.  This means that, to the extent possible, if you have a child that you have reason to believe may qualify for SSI, you need to keep countable assets out of his/her name.  Assets that the child can have are listed here.  

Once you retire or die, your disabled child can collect Social Security Disability benefits, and, after doing so for two years, will qualify for Medicare.


People who qualify for SSI also qualify for Medicaid, the state medical insurance program for the poor.  In Louisiana, Medicaid pays for dental work for people under twenty-one, but not for those over twenty-one, so we made sure the wisdom teeth were removed prior to age twenty-one and made sure he saw the dentist right before his birthday that year.  If your child is covered on a family insurance plan, Medicaid may help with the premiums, but if your child has ongoing expensive medical needs,  you may want to compare the costs you would pay out-of-pocket with the amount they would pay toward your premiums and decide which is better.  Generally, private insurance gives you a wider choice of physicians and facilities.  

Ticket to Work:

Qualifying for SSI also qualifies a person for "Ticket to Work", a program designed to help the disabled find a job and acclimate to it.  At least in Louisiana, once a young adult has qualifed for SSI, and indicates (or has a parent that indicates) an interest in obtaining a job, he or she is referred to the state Department of Rehabilitation.  A case worker is assigned and the young adult and his/her parents formulate an employment goal, which can be a regular job, a job in a sheltered workshop (a job in a facility that caters to hiring the disabled and which has permission to pay them less than minimum wage) or further education.  If employment is the goal, the next step is selecting a vendor from the list.  This vendor can be for-profit or non-profit and its job is to evaluate the young person, help him/her apply for appropriate jobs and to interview for them.  Once hired, the employment vendor interfaces with the employer to make sure everything is going well.  Generally a job coach is sent to work with client during the first days or weeks on the job.  The job coach is there to make sure the client knows how to do the job, as well as how to follow workplace procedures and rules.  As the client gains more experience, the job coach fades out.  People who are receiving SSI can work and continue to receive SSI; however once an SSI recipient earns more than $85 in a month, his/her SSI is cut $1 for every $2 earned.  

SNAP (Food Stamps)

If the parents do not qualify for SNAP, the young adult does not qualify, at least in Louisiana.  If she/he is living at home, until s/he is 22, the parents' income is used to determine eligibility; after age 22, the young adult's income is used. 

Waiver Services:

At one time, not too many years ago, there were basically two choices in the care of the disabled:  they were either instituionalized or they were cared for by family members at home.  In the last twenty years or so, the emphasis has been on keeping the disabled, even the severely disabled, with family or in the community, much as the school systems are now required to provide the least restrictive environment.  Many of the services needed to accomplish this are provided through pots of money called "waiver services" (don't ask me, I didn't name them).  State waiver services can provide a certain number of hours of a Personal Care Attendent per week, respite services or vocational training.  

That $10,000 mentioned above?  One of the employement vendors with whom we worked stated that my son was not ready for a regular job and explained his deficits (which I had to admit were there).  She wanted to put him into a program run by a local school for those with cognitive impairments.  In that program, my son worked at a local health club under the supervison of a job coach.  Instead of him being paid, I paid about $450 per month for him to participate in that program. While the employment vendor sent me to apply for waiver services to pay for the training, our timing was terrible.  At at time we applied, there was a three month waiting list.  Due to problems with the state budget, that waiting list did not move at all for the entire time he was in that program.  Since I did not want my son sitting home doing nothing, I used his SSI money to pay for the training.  Had I applied for waiver services when he turned eighteen (I called them then but he was still in school and I did not think I needed the services they listed), that training would have been paid for by the state.  Today the employment vendor who finally found my son a job gets some waiver money for regularly following up with him and his employer to make sure everything continues to go well.

Besides the state waiver, there is a federal waiver.  The waiting list for this waiver is over ten years.  I've been told that the purponse of that waiver is to replace financially what the child is getting from parents.  It can provide housing and other services such as supervision necessary to keep the handicapped individual in the community.  A social worker told me that once people get this waiver, they stay on it until they die, and that she has seen some plans that cost over $100,000 per year.  The plans are developed with the client and family to meet the needs of that client.  They are administered by companies that provide that service and each client has a case worker.  One day when we reach the top of the waiting list, I'll let you know what services are available.  Luckily, at this time we do not have need of any services which we are not receiving.  My son is able to drive himself to work, do chores around the house and take care of his personal needs.  Our main concern is his long-term financial security.

Special Needs Trusts

As noted above, those with monetary assets above a certain level are not eligible for SSI, Medicaid, or the services that use SSI eligibility as the criterion for inclusion.  While that may not be a problem when parents are alive and providing a home, food, and other financial support; once the parents die, often money will be needed if the disabled individual is to maintain the standard of living to which he or she is accustomed.  The Special Needs Trust is a way parents can leave money for the support of a child without the assets belonging to the child and disqualifying him/her for government aid.  The special needs trust for my son is created in our wills and basically they say that his share of our assets will go into a special needs trust, and that if he does not exhaust that trust before he dies, the remaining money will go to our daughters or their heirs.  You need to get an attorney to create the trust and you will need someone (either a family member or a finanical institution) to manage the trust once you are gone.  

Able Accounts

Congress recently passed a law allowing Able Accounts.  Like Coverdale college savings plans, Able accounts allow for tax-deferred savings.  Just as importantly, Able accounts do not count toward the asset limits for needs tested aid.  According to Autism Speaks, Able accounts can be up to $100,000 and may be spent on  "Expenses made for the benefit of a disabled individual for education; housing; transportation; employment training and support; assistive technology and personal support services; health, prevention, and wellness; financial management and administrative services; legal fees; expenses for oversight and monitoring; funeral and burial expenses; and any other expenses approved under regulations."  While the US Congress has authorized Able Accounts, each state must pass appropriate laws before they are available in that state.  According to Disability Scoop, it may be 2016 before these accounts can be opened.  Nevertheless, they are something to keep in mind.  

Living Arrangments

Right now my son lives with us.  The arrangement works for all concerned, and since he does not have the financial ability to afford his own place, it is a good thing he is happy here, and that we are happy with having him here.  The question is "How long should he stay?"  What is best for him?  Right now, having him here is the least expensive choice.  I get a little work out of him; I collect the majority of his SSI/earnings for his room and board.  He has regular interaction with people who love him.  If moving out was financially feasible, I think he'd spend far too much time alone, interacting only with a computer screen.  On the other hand, we aren't going to be here forever.  Our house is a 2000 square foot, 3 bedroom, 2 bath suburban home.  It is much more house than he needs by himself.  It is better for him to lose his parents and his home in relatively short succession, or is it better for him to establish a home of his own long before our deaths?  Or should we do all we can to assure that he can stay in this house for his entire life?  With my son's disability, those are the questions that go through our minds.  My son would be capable of living alone in this house with relatively minimal oversight, if the money was there to pay the bills.  Many disabled people would not be capable of this level of self-care and the questions of continuing care become more important.  Here are some options:

Living with a Family Member

Depending on family dynamics and the severity of the handicapping condition, this may be the best solution.  If one of his sisters and her husband (if in picture) is willing to have him live with her, this would put him in a position much like he is in at our house.  However, that is not an option in many families, either because of a lack of siblings, the lack of cooperation of siblings and/or in-laws or because of the high level of care needed by the disabled person. 

Other Options:

 This page from the National Down Syndrome Society lists some of the housing choices available for the disabled.  The money to pay for them comes from a variety of sources including Waiver funds.  Factors to consider are what types of services are available in your hometown (like more other things, more variety is offered in larger towns than in smaller ones), the amount of supervision needed, and the preferences of the disabled adult.

While parents of normal children have every reason to believe that those children will outgrow their financial dependence on their parents, many parents of special needs children realize that financial independence is not in their child's future.  Hopefully this article has gotten you thinking about your options and possible resources.

Do any parents of special needs adults have any advice for those whose kids are reaching adulthood?

This post was linked to Love That Max Special Needs Blogger Link-up.

*Part of Financially Savvy Saturdays on brokeGIRLrich, A Disease Called Debt and Shoeaholic No More*
Also linked to Final Friday Finance


  1. Housing? Would it be possible in the next few years to look for a small house that could be rented out for as long as you need it to be? then, when he is ready, the trust can take it over and he could live in it? If his sister takes him in, then the trust could generate money as a rental to help with his support.
    A whole lot to think about- especially since his age group is the tip of the iceberg.

  2. There are fourplexes in our neighborhood and we have considered buying one of them with the idea of him moving into one of the units. It is a lot to think about

  3. I have a friend that has aspergers but he seems pretty independent. He has mentioned that his housing is taken care of which makes me believe his parents bought the house he lives in. He is also able to hold a regular 9-5 job and he went to college and now has a steady girlfriend.

    I used to work for a financial advisor and everything in this post is things we used to talk about with several of our clients that had children with disabilities.

  4. I think housing would be the scariest thing after you pass on ...maybe as time goes on you will know more about where your son will live. Dealing with the unknown is hard.

  5. This is a really important post. The housing is the scariest. State run homes are abysmal.... Abuse and neglect is rampant. As far as medicaid, my understanding is that children on the spectrum generally qualify even if the parents have insurance/assets and medicaid picks up the difference. I suppose this probably varies from state to state, but due that change once they turn 21?

  6. This is a really important post. The housing is the scariest. State run homes are abysmal.... Abuse and neglect is rampant. As far as medicaid, my understanding is that children on the spectrum generally qualify even if the parents have insurance/assets and medicaid picks up the difference. I suppose this probably varies from state to state, but due that change once they turn 21?

  7. Wow! Your son is handsome. I believe the key here is to good planning to ensure all his needs are meet.

    1. Thanks. I like him, and he looks like his Dad!

  8. This was a really insightful post. How do the sisters feel about your son living with one of them? This could be the easiest option but perhaps getting your son accustomed to living alone at some point in future would be better for him in the long run. I wish you all the best with whatever you decide.

  9. We have a daughter (24 years) living with us who is physicaly disabled. Our family has gone through and are aware of everything you wrote about. My thoughts for her future are right with you. It is constant that keeps me up some nights. We currently are trying to take steps to prepare her for life without us too and some days the task is daunting.

  10. woah - this is something i've NEVER thought of, even though i have a family friend who has an adult special needs son. it sounds really ignorant, but i never really considered the financial responsibility you carry with you as they age into adulthood. he is so lucky to have such loving parents!

  11. This is a very timely post for me because we have a 17 year old with autism. These are all things we are considering I will be back to read this more carefully with the hubs and a note pad. Thanks!