Marriage Planning for Adults with Disabilities

Adults who experience disabilities have many of the same dreams that adults without disabilities have. Marriage is one of those dreams. Unfortunately, the same dream can bring complexities that might not occur for those without disabilities.

Based on contacts from parents since Parenting an Adult with Disabilities or Special Needs was published I wish I had dealt with the issue in more detail.

Finding that perfect mate brings up many issues by itself. Love, acceptance, and tolerance can be a challenge in any marriage; however, where one spouse must be able to tolerate or take on more than the average spouse it can become even more complicated. It is very awkward. Many people who don’t experience disabilities have made poor choices in spouses. Maybe things that were not obvious at marriage show up in later life and are not tolerable to one spouse. That can certainly be true for disabled adults too.

There is also the possibility of potential spouses who want to marry someone who experiences a disability for the wrong reason. We have all heard the horror stories about people who marry someone with special needs to take advantage of them financially. Others may genuinely want to take care of the person but once married it is not what they expected. Both situations can be devastating to the person with disabilities.

As parents, we want to protect our children and the tendency is to go to all extremes in that pursuit. Our objectivity in evaluating a proposed spouse might be compromised by our knowledge of our child’s needs. It might be harder to see the value of such a relationship to our adult children.

It is further complicated by laws both state and federal that impact a marriage. The Social Security Administration policies do affect marriage for a person classified as “Disabled Adult Child” for their purposes (usually drawing on a disabled or deceased parent’s claim). The adult child may lose all benefits including Medicare unless he marries another “Disabled Adult Child”. Even SSI recipients who are not classified as disabled adult children may lose a substantial part of their benefits if they marry.

I have heard of cases where a minister actually conducted a wedding and the bride and groom considered themselves “married” in the eyes of God but they were not legally married so they wouldn’t lose their benefits. I can only imagine the complications in those cases. Others have decided to marry anyway and lose benefits. The extreme poverty it brings further complicates their disabilities.

I have often thought that if Congress would only realize that Social Security
policies actually end up costing taxpayers more, maybe they would look at adding some flexibility. For example, if two people receiving disability benefits marry, they will lose part or all of their benefits. Suppose both were receiving funding for in-home support staff because it would not be safe to be alone but one support staff would be adequate for both. It also might be that they could help each other more and require less paid help.

Most states have their own laws about whether guardians can refuse a disabled person the right to marry even if it is not in their best interest. Thus, it is important to get legal advice from an attorney or advocacy center in your own area to determine how to adequately deal with the situation if it arises or, in the best-case scenario, to be prepared before it actually arises.

Until next time,
Peggy Lou Morgan

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Technical Glitches

I have been trying to follow the publicist assistant’s advice to combine the blogs for both of my books into one blog. However, I have been having great difficulty figuring out how to get the feeds to various places switched. For example, Wellsphere feeds one blog to their Autism community and the other to the Down syndrome community and they can’t feed the combined blog to both communities. I thought I had it fixed for Amazon Kindle readers but apparently not.

For now I am going to write posts of the two blogs and post both of them on the combined blog as well. Hopefully, I will get things switched at one point be down to one blog.

Thanks for your patience with me.

Peggy Lou

The Horror Continues

It seems the horror of abuse and even torture of children and adults who experience disabilities will never end. Just last week I blogged about the "Fight Club" Everyday there seems to be new stories. Yesterday my husband gave me a link about abuse in the public schools and Kev Leitch posted Autistic man tortured

I don’t think that we will totally eliminate abuse against people with disabilities anymore than we will totally stop the abuse and murder of vulnerable children or others who don’t experience a disability. However, there are things that will help protect our children.

I have often written about awareness versus what I see as true acceptance that will make a difference in the life of an individual. See Awareness that Brings Acceptance, The Awareness Controversy , and Community Bulding and Awareness.

I initially started what I came to call “creating a community” for Billy Ray because of difficulty we had in his acceptance in public environments such as stores and restaurants. I laughingly refer to it as creating your own Little House on the Prairie even in large metropolitan areas. You will have only so many stores, restaurants, recreational establishments, etc. that you go to with your child or adult child. That way your child and the people in those environments get to know each other better than if you go to new environments each time.

It takes times to establish those relationships (outlined in Chapter 14, Parenting Your Complex Child) but they bring comfort and security to both your child and those in his community. Thinking about this post while we were having lunch at Billy Ray’s favorite restaurant today, I looked over at the cook and imagined if Billy Ray and a friend were having lunch there and someone harassed him. I could picture him coming out of the kitchen to intervene for Billy Ray in a heartbeat because of the affection he demonstrates for my son. The same with the clerks in our local grocery store and BiMart because he is someone they know and look out for.

A recent interview question was about how parents can find the time to build relationships for their kids. It certainly can take time but it is vital to your child’s happiness and protection. Some of the effort can be done while you are doing things you would normally do such as grocery shopping. Building relationships with the neighbors is not only friendship for your child but they will be more likely to watch out for him.

The more people involved in his or her life the more likely that his community of friends will be there to protect him when you can’t be.

Until next time,
Peggy Lou Morgan
Blogs: Parenting A Complex Special Needs Child , Amazon Author Connect and Lighthouse Parents

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A Horrible Reminder to Plan for Protection of Your Adult Child

In Parenting An Adult with Disabilities, I talked about assuring that support would be there for your adult child when you can’t be. It doesn’t matter what level of functioning your son or daughter is. If they are living independently in their own home or some facility, they could be abused in some way and terrified to report it.

I walked through the living room in the middle of a piece on a Fox News program and then searched for the story on the web about the “Fight Club” at Corpus Christi (TX) State School for the Mentally Disabled. One of the commentators called it “human dog fighting”.

Disabled residents were forced fight each other by night staff at the facility and it was filmed on cell phones. One of the alleged ringleaders apparently left his cell phone at a hospital and it was turned over to police to find the owner. Police found video of the Fight Club on the cell phone. That is how this terror was discovered. I wonder how long this whole terror for the residents had been going on and would have gone on if the phone had not been forgotten.

According to the ABC News story “One resident is seen on the video trying to run away from his attacker and a large group of employees and residents tracking him through the halls. When cornered, he wails and moans and tells the employees, "I will behave."

This story is horrifying but is an important reminder of why it is so important to plan someone (or multiple friends) who can be trusted to stay involved and check on your adult child regularly when you can’t . Someone visiting the residents regularly would surely have seen bruises, etc.

Until next time,
Peggy Lou Morgan
Blogs: Amazon Author Connect Blog, Parenting A Complex Special Needs Child and Lighthouse Parents
Websites:
Parenting Your Complex Child, Lighthouse Parents and Peggy Lou Morgan.com
Follow me on Twitter
My Wellsphere Page
Lighthouse Parents on Tangle
Parenting Your Complex Child Yahoo Group

Parenting an Adult with Disabilities or Special Needs Receives Award

I am so honored that Radical Parenting found my book to be one of the 50 best parenting books.

Until next time,

Peggy Lou Morgan
for a complete list of my sites www.peggyloumorgan.com

Preserving the Parents' Expertise

Part of a question from an interview I did recently has haunted me. It suggested that some might feel transition planning was letting go in the sense of giving up on an adult. I decided to chat with you in a video blog today about that. I am pasting the video below. Depending on what feed you are reading this post on it may not come through. If not, go to my video blog page here .



Until next time,

Peggy Lou Morgan
For a complete list of my sites see www.peggyloumorgan.com

Joe Steffy, a Success Story

The story of Joe Steffy, who experiences the combination diagnosis of Down syndrome and Autism, is small business owner (Poppin Joe's Kettle Korn). See the full story here .



It is the classic example of what parents working with their adult child can accomplish. The parents did not believe the school district's assessment that Joe would never be able to be independent. Together they ascertained a future that would work for him, set about writing a business plan and getting a small grant.



I was anxious to share these links with my readers because it will encourage us all relative to what is possible for our own children and adult children.



By the way, I have just added the feed for this blog and Parenting a Complex Special Needs Child to my Amazon Blog so that you can read both at the same there.



Until Next Time,

Peggy Lou Morgan

For list of sites see http://www.peggyloumorgan.com/

Your Adult Child's Pursuit of Happiness - Who Will Design

Everyone seems to have an opinion about what will make your son or daughter happy in adult life. Unfortunately, some of it is based on what is most prudent for programs not on person centered planning.

Whether he is high functioning and can learn to self advocate or needs a more involved advocate he has a right to be totally involved in choosing a future that will make him happiest. You can help him on the journey to pursue what will be a happy life but he needs to be as involved in those choices as possible.

If at all possible start taking your younger child to I.E.P.'s so she starts to learn advocating from you and to have as much understanding of oppportunities for the future as possible.

In Parenting an Adult with Disabilities or Special Needs, I have included some exercises you could try together to help him demonstrate interest in specific plans. Hopefully, it will be helpful in jumpstarting the conversations between you.

Until next time,
Peggy Lou Morgan
for a list of my sites see www.peggyloumorgan.com

If Only I Could Be More Like My Son

Looking at Billy Ray, now 26 years old, this morning I was thinking if only I could be more like him. He is full of life and dressed in slacks, white western shirt, and blue sport coat wanting me to help him with his belt and tie. That’s been his favorite attire since this little picture at 3 years old. On the other hand, my attire this morning consisted of a warm bathrobe, slippers.

Everyday is an adventure from the time he arises in the morning until his eyes finally close at night. While I am trying to get my acid reflux meds down and survive until I can have coffee to get my eyes working to do his blood sugar test and read my email, Billy Ray is raring to begin his day. If only I was more like my son.

I love the piece by Dr. Dennis McGuire of the Adult Down Syndrome Center in Park Ridge, Illinois, called If People with Down ’s syndrome Ruled the World. Things would surely be different if that were the case. Take a look at it here – hopefully it will give you a chuckle and a better understanding of people who experience Down’s.

Until next time,

Peggy Lou Morgan
For a complete list of my sites http://www.peggyloumorgan.com/

Don't Worry, Be Happy

I was struggling with what to title this post. Technically, I had written some of what this post covers in a prior post; however, there have been lots of news about program cuts, etc. and I felt like I needed to post again. The title I might of used sounded like the prior post. This title kept coming to mind. Can't remember if it was a song or a commercial but I remember it was a slogan from a few years ago.


In his recent program Geraldo Rivera called “The Waiting List”, Geraldo at least twice mentioned that he has been hearing folks talk about returning to institutionalizing people with disabilities. In a video on his Fox News website Geraldo talks about why he made this program and he also provides clips from his famous expose` on the Willowbrook. You can view that video by clicking here.

I know that news and talk about budget cuts is scary. The anxiety of “the nagging question” of what happens to our children when we are gone is why I wrote Parenting an Adult with Disabilities or Special Needs. With the concerns expressed by Geraldo and others we need to be proactive in terms of having people who will understand your adult child’s needs and be strong advocates when your voice is less available to your adult child.

There are things you can do in the meantime to protect your adult child. Instead of being stuck in anxiety over what might happen to your child, expend that energy on planning for him.

Some adults with disabilities are high enough functioning they could live independently but still need someone to check in occasionally. Generally, that service is provided by semi-independent living programs. If funding for those services were cut you could easily have a backup from your church or circle of friends. Instead of worrying about what might happen, think about who could provide a piece of what your child needs. It is amazing how much relief comes from being proactive rather than worrying.

Until next time,
Peggy Lou Morgan
Author of Parenting Your Complex Child (AMACOM Books 2006) and
Parenting an Adult with Disabilities or Special Needs (AMACOM Books January 2009)
http://www.peggyloumorgan.com/ for a complete list of websites and blogs