Parenting an Adult with Disabilities or Special Needs: Everything You Need to Know to Plan for and Protect Your Child's Future [NOOK Book]

Read an Excerpt

Introduction

In the preface for my first book, Parenting Your Complex Child, I compared

life with a special needs child to a war with many battlefields. You may

think that transitioning into adulthood for your child will be less of a combat

zone. Sorry to burst your balloon. It can be the same war with more battlefields

because more governmental agencies are involved in providing

services and support to adults with disabilities than to children.

In 1994 Joseph Shapiro wrote No Pity: People with Disabilities Forging a

New Civil Rights Movement, which shared the stories of people who had

struggled for their rights despite disabilities. In 1990 the Americans with

Disabilities Act (ADA) was enacted. Yet, in 2006, I wrote:

Disabled persons have equal access to all public places [that] is guaranteed

under the Americans with Disabilities Act. We aren’t locking all

disabled persons away anymore. Yet when I take my son out in public

and everyone stares, I find myself looking around and wondering,

“Where are his peers?” He is often the only developmentally disabled

person we see in restaurants, various types of stores, and even our

church.

Taking our complex children out in the community can be hard

work. Just getting out the door can be exhausting. If your child is loud

or disruptive, the public can be vicious. The question of whether it is

worth the bother is always in the forefront.

Public transportation and sidewalks are more wheelchair-accessible in some

areas. Other areas, such as New York City and Bend, Oregon, are still very

much in need of accessibility. And the public itself is not necessarily more

accepting. I see fewer people with disabilities working in offices, grocery

stores, or restaurants, even though they may enjoy the work more than other

employees. Recently I overheard a bank manager and a local business

owner discussing how difficult it was to keep good employees. In our area,

which is big on skiing and other tourist attractions, surely people with disabilities

could be recruited for many jobs. As we will see, it might be more

than lack of recruitment on the part of employers.

Eighteen years after the enactment of the ADA, you would expect to

see more and more people with disabilities in the community, not fewer and

fewer.

In a recent conversation with Andrew Houtenville, of Cornell University’s

Rehabilitation Research and Training Center on Demographics and

Statistics, he described SSI (Supplemental Security Income) and SSDI (Social

Security Disability Income) as being “institutionalism in the home.” In

other words, many things such as medical care, housing, food stamps, and

other services for disabled persons are tied to one’s eligibility for SSI. If one

risks losing his SSI by earning enough money to be disqualified from the

benefit, he also risks losing other life-sustaining services such as medication,

healthcare, and in-home assistance. Incentives to try to create a fulfilling

life are hampered greatly by such policies.

I wrote a second book because my son, Billy Ray, now 26 years old, is at

this transition stage in his life. I wanted to share the complexities that he

and others who experience disabilities will go through. Hopefully, this new

book will help other parents prepare for the family transition process.

I laughed to my wonderful editor, Ellen Kadin at AMACOM Books,

that maybe I shouldn’t write any more books. After the first book had gone

to the publisher, Billy Ray experienced a health crisis. My editor encouraged

me to add information about that crisis to the first book. I experienced

a crisis near the end of writing this book. On New Year’s Eve 2007, I experienced

breathing problems and was rushed to the hospital. During the ambulance

ride, the EMT told me that if I didn’t slow down my breathing, I

might not make it to the hospital. All I could think about was my son Billy

Ray’s transition to adulthood—and everything about it that had yet to be

done. Again, I dealt with that nagging question: What will happen to Billy

Ray when I die? Again, it gave me something to add to what I had written.

Maybe like me you think that you have made all the arrangements to

protect your adult child. Periodic review of the options may show more that

you can do to protect him or find more opportunities for him.

It may seem easiest just to keep your adult child at home with you,

where he is safe and happy. The difficult transition may not seem worth it.

But it shouldn’t take a wakeup call like mine to realize that he will likely

survive you. Unless you do something about it, he will be unprepared to

leave the nest you have created for him. Plus, he has a right to as fulfilling a

life as possible. So the most loving thing you can do for him is to prepare

him to fly from the nest. That does not mean that you will dump him out of

the nest before he is ready or you have found (or created) an appropriate

adult situation. It means that you will do all that you can to prepare for that

event even if you are not available to participate in his transition.

Sometimes the struggle seems overwhelming. But the alternative is not

desirable: You could keep your adult child at home until you can no longer

assist him. If no transition planning is done, the chances are your county or

state agency will place him wherever they have a slot available. It will not

necessarily be the ideal for him as an individual, which may add frustration

to his loneliness over not being with you.

It has probably taken you years to become the expert on your child. You

know what his behaviors mean, and you automatically respond in the appropriate

way. You know how to maintain his environment and routine in

order to avoid confusion, which has an impact on his ability to go with the

flow rather than have a meltdown out of confusion. You’ll need to preserve

this expertise for the transition process.

There is a tendency for others who don’t know your child as well as you

to deal with withdrawal or behavior problems with medication to make

someone with disabilities more “manageable.” I believe that a lot of behavior

issues are caused by what I call “communication by behavior.” (In his

writing and presentations, “difficult behavior” expert Dr. David Pitonyak

refers to it as “messages,” but the principle is the same). The behavior is a

communication that something isn’t working for the person. It could be an

environmental issue, a physical problem, or an inability to communicate

something that is bothering him. It may have taken you much of his life to

figure out what works best. If he were placed in a facility or group home

where staff didn’t have the benefit of your knowledge, the chance is high

that his behavior will be seen as just undesirable behavior, not as communication.

And, rather than “listening” to what’s being communicated by behavior

and maybe finding a solution to a problem, medication to control

the behavior may be prescribed.

I am not anti-medication, but finding solutions first is always desirable,

if possible. My advice is to document the “communication by behavior” you

have discovered over the years and solutions you have created for dealing

with the issues. Then train assistants, job coaches, and others how to respond

to specific behaviors.

Like anyone else, regardless of disability, your adult child will undoubtedly

experience disappointments in life. On the other hand, by taking a

proactive stance in transition planning, things will be much better than if

no steps are taken. The panic surrounding that nagging question will be

substantially reduced.

Several years ago, I was privileged to hear Dr. David Pitonyak at a conference

where we were both speaking. He gave a handout entitled “Loneliness Is

the Only Real Disability.” That phrase has haunted me ever since, because I

have seen the loneliness of many people who experience disabilities.

There are many things that we as parents can do to make a difference

in our children’s transition to adulthood. However, even if we can do

nothing else but plan to avoid the loneliness, we will have accomplished

much. Perhaps having long-term nurturing and healing relationships may

be even more important than finding the most ideal work or residential

experience.

Thus, instead of getting stuck on what we can’t do because of red tape or

lack of resources, we can move forward and accomplish things together with

our adult children. We can find the peace that comes from dealing with the

nagging question of what happens to him when we are gone because we

have been proactive in creating safeguards and protections for him.

Some adult children may continue on to college or vocational training.

Others may try to merge into the community through meaningful employment.

Compared to school settings, each of these options brings significantly

increased challenges and perhaps even more prejudice and lack of

acceptance.

When your child was in school, you probably had IEP (Individual Education

Plan) team meetings. These may have been filled with conflict regarding

the appropriate education for your child. In most areas, the same

team concept applies to services for adults. The team may be smaller than

the IEP team. Like the IEP team, its purpose is to create a plan and goals for

care and service, this time for an adult with disabilities. This is often referred

to as an “Individual Service Plan” or ISP. Other agencies such as Social

Security, the Housing Authority, and Vocational Rehabilitation may

not get directly involved with the ISP team, but you still may need to interact

with them because they provide services to your adult child.

There is another significant battlefield in planning for adults with disabilities:

legislation intended to help people who experience disabilities

with support and medical care, etc. Instead what they have created is a

“poverty track,” according to David C. Stapleton, Center for Studying Disability

Policy, Mathemetica Policy Research.

Because of the lack of opportunities for adults with disabilities, it is not

unusual for an adult child to still be at home with his parents when they are

elderly. Transition will be smoother and more successful for an adult with

disabilities when it occurs during his parents’ lifetime—and when the parent

are still able to participate in it.

What is a parent to do? Actually, there are numerous things that will

make a real difference in your adult child’s transition to adulthood. It may

feel hopeless, but you need not accept defeat and give up. You can be proactive.

It doesn’t require a PhD (although you will learn a lot) and it’s not

combat duty (although you’ll face battles of a different sort).

Team-building advocacy for your adult child is just as important, if not

more so, than when he was a child in school. You can make it a war, or you

can work to build a team that will accomplish things for your adult child.

Appendix C contains article entitled “Team-Building Advocacy” from

my website, www.parentingyourcomplexchild.com. It addresses children,

not adults, but the principles of team building are applicable and you may

find it helpful.