My Name is Sarah

MY NAME IS SARAH. I am a quilt designer and the sewcial director of Sarah's Sewcial Lounge. I also have a business called Down Right Charming. I sell my quilts mostly on etsy and I make pillowcases to donate to patients in the hospital in memory of my friend Kristen Kirton. I am a young adult living with Down syndrome. I hope you enjoy reading about my life journey.

Thursday, February 7, 2013

Home is Where the Heart Is

Note: scroll through content for updates from original post.

By Joyce:  earlier this week we opened a comment that came into this blog that read..."I've been following your blog for a few months. I enjoy seeing what Sarah is doing but I am curious why she is still living at home at age 23? I don't mean to be critical just wondering. Maybe you could do a post about this."

It came from "anonymous" and truthfully I usually just delete those comments.  But something told me that the person writing was not just making idle chatter, rather had a specific reason for asking.  Perhaps they are wrestling with this same issue themselves. Or maybe they have a little one with Down syndrome and wonder what the future holds. It could even be they have been given a pre-natal diagnosis and they are trying to make a decision. 

There is only one thing I can relay on this subject for certain, the answer to this question is not easy.  Nor is there a right or wrong answer. In-fact, if you poll a room of parents of teenagers with Down syndrome, you will get as many different viewpoints as there are attendees.  Some parent(s) believe strongly that the transition phase must begin the minute the teenager turns 18.  Others are less defined with a time frame and still others have no time frame at all.  There are also many who have no plans for their adult with Down syndrome to ever leave home.

For us, the answer to the question is very simple...Sarah does not want to move out at this time.  She is adamant that the home she grew up in is where she is meant to live.  And today, my husband and I support her in that decision. 

Supposing though, Sarah woke up tomorrow and stated the time has come to move out. What would we do?

I'm not sure. And that is where the road does get a little murky.  We would not be able to financially support her in a separate living arrangement without assistance.

Currently in the state of Ohio, residential living options are largely funded by an I/O waiver.  By definition: IO (Individual Options) Waiver is Medicaid funding used to support people to continue to live in their family homes, or in settings such as group homes, small group settings in the community, or one's own apartment.  Services include homemaker personal care (daily living care) transportation, home modifications, adaptive equipment, and adult day services. Level of funding determined by individuals assessed acuity.

Sounds great, doesn't it?  Sign us up.

So in May of 2007, shortly before Sarah's eighteenth birthday, we asked to have her name added to the wait list for this waiver (in many states, you can add your child to the list shortly after birth if you wish). Every December, we receive a letter indicating her place on this waiting list.  In our state, each county has it's own list and they do not share.  So if we were to move to another county, she would start over on that county's waiting list.

Sarah is currently 1,362 on the list in our county of Cuyahoga.  She has not moved too much on the list in the last five years.
2007 - 1,996
2008 - 1,748
2009 - 1,553
2010 - 1,427
2011 - 1,331
2012 - 1,362
Based on these numbers, we would not anticipate her name being called for at least a decade.  That means she will likely be well into her 30's before a residential placement opportunity presents. 
However, if you look at the bottom line it reads, "Status on List: Normal"  We do know that should something happen to both my husband and I, her status could be elevated to "Emergency." 
However, there is even a hierarchy to "Emergency":
An individual needing support due to an emergency situation as defined by the state (risk of substantial self-harm or substantial harm to others if action is not taken within 30 days) will receive first priority for any/all services.
Next, individuals who have been identified as meeting the state's priority criteria will be offered services. Those priority categories are defined as:
  • Refinancing-refinancing of services for adults (ie:moving those already placed in large institutions into smaller group homes)
  • Intensive Needs - such as severe behavior problems requiring a behavior support plan: a mental health diagnosis requiring medication: complex medical conditions requiring life support technology or combination of specialized medical, psychological
  • Parent over the age of 60
For Sarah, her complex medical conditions would likely be taken into consideration.  She is not currently on any type of life support technology, but if not given the proper care, she could deteriorate quickly with her delicate respiratory system.
If nothing else happens before, my husband and I both reach age 60 in the year 2020.
So for now, I just file the notification away in our MR/DD notebook.

This is just one of the many binders I keep with information regarding Sarah in the event someone other than myself would need to assume her daily care. (yes, I do need to make a new cover sheet to get rid of the MR)
So if you're still with me, you might be asking what then happens in 2020? Great question. 
In seven years, so much can change. Yet, if I were to base my answer on today, I know there are options. We also know that funding drives much of the discussion.  
First, we would assess her current needs and desires. It does not currently seem feasible that Sarah could live completely on her own.  She needs oversight of her medications. She needs assistance showering. She needs help with cooking.  We know that Sarah does not like large group settings.  More than three or four in a group is not comfortable for her. She likes her own space.  She moves on her own time schedule largely set by the fact she works in retail.  She tires easily. She does not like loud noise.  Her environment the last few years has been free of perfumes, scents and strong odors which has kept her out of the hospital.  We have protected her from pets and cigarette smoke. This will all need to be taken into consideration.   
But if and when the time is right for her, we will complete the process with due diligence. We might not hit the right setting the first time, but will keep trying if it's what is needed. I do believe that what works for one adult, will not necessarily work for another. 
Sarah also has two brothers, one older and one younger, who might wish to be a part of her life planning process.  Their desires, along with their spouses, will always be taken into consideration. 
For now, Sarah is happy. Very happy and healthy.  And so are we.
I hope this helps to answer the question.  If not, please do not hesitate to ask for further clarification.
Question:  I know there are individuals living in group homes that are not in their 30's.  How did they get in?
My answer: Every case is assessed individually. It may be the person's circumstances met an "emergency" criteria.  It is possible the family refused to provide in home care and therefore the person was "at risk".  Just as there are families who put their baby up for adoption once they are told he/she has Down syndrome, there are families that at age 18, put their adult into the care of the county.  Each family will make decisions based on their circumstances.
Question: I don't understand why you are just going through the county. Why don't you contact a private housing organization such as North Coast Homes?
My answer:  That is a really good question and one that I did not fully understand until recent years. When Sarah was younger, I would attend seminars in our area and listen to presentations and bring home literature on these residential housing providers.  In the greater Cleveland area we have several, North Coast Homes as you mentioned, Koinonia Homes, the Help Foundation which operates Six Chimneys, an apartment complex near downtown, and Welcome House to name a few.  They are separate 501(c)3 entities, but they ALL utilize the intake department through the County Board of Developmental Disabilities which utilizes the previous detailed criteria to determine eligibility.  Each of these residential providers receives money through the I/O waiver which follows the individual. 
Question: I have a friend who knows someone who rented an apartment with some other women and they hired someone to come in a few times a week to make sure everything is going well.
My answer:  There are indeed some very creative collaborations between parents, county providers and private funding sources. I encourage everyone to explore ideas. I would love to feature some of them on our blog if you will forward contact info to us.  


goldenleaves said...

Very interesting!

I didn't even think about all of those options, so far, at 12 months old, I'm on the "never leaving home...ever!!" category for Lauren. ;)

goldenleaves said...

Also, I didn't move out of my mom and dad's house until I got married!

Becca said...

Joyce - this was SO informative, certainly to the person who asked, but also to those of us with younger children who just don't know the ins and outs of the waiver system, the waitlist, etc. Thank you, thank you, thank you for this. It is much appreciated!

Jim said...

Thank you for sharing, Joyce! We are moving from Ashtabula to Geauga County in a couple weeks. I wonder what the program is like there.

Now that we will be in Chesterland, we hope to finally meet Sarah and visit often! We will just be 15 minutes away!

Anonymous said...

I have a one year old, and found this very interesting. Thanks so much for sharing!

Rochelle said...

Great post Joyce. Always thankful for you keeping it real!

Leah said...

I am so glad you posted this. It is so complicated and I am sure every state/county has some variations. But still, it's nice to know how things are looking for the future. Maybe it can help with planning. I love your blog so much. So appreciated!

Simply, Sarah said...

Thank you for this post. It doesn't relate to our family right now, but it is definitely something that I will keep in mind for the future!
And, it's a great reminder to have Anthony's information organized and in binders. Thanks. :)

Matthew Smith said...

Are you aware of the case of Jenny Hatch in Virginia? A young woman with Down's syndrome is being kept in a group home against her will, because her mother wants to be her guardian although she was out of her life for the past several years. She had been living semi-independently, working in a shop and going to church, until there was some sort of accident and some way needed to be found to provide her with care afterwards. She has been trying to get back to her friends; the courts have kept her in a group home and denied her access to her phone or computer and prevented her from receiving visits. It's shocking. Is this being talked about a lot in the US Down's syndrome community, or is it just a local dispute in Virginia?