Posts Tagged ‘caregivers’

photo credit: Creativity+ Timothy K Hamilton

Searching for a Roommate: Medicaid Waiver style| Part 6

This is Part 6 in a series of posts about moving my son Aaron, who has the label of autism, from one county to the adjoining county where we live.

Part 5 contains links to the previous posts: Cash Cows and HUD Interviews| Part 5

Note: The HUD Section 8 rent voucher pays for the rent. The Medicaid Waiver pays for the direct care staff who take care of Aaron.

Ball One in the Air: HUD

HUD Timeline:

May-July County Board of DD set up three home visits with potential housemates for Aaron.

June 30 We, Aaron’s Guardians, requested to move his HUD rent voucher to W. County.

July 6 Signed HUD paperwork in the sending county.

July 15 Met with HUD counselor in the receiving county and completed paperwork.

July 16 Asked for our first 30 day extension from sending county.

Aug. 8 Asked for our second 30 day extension and now have until the end of Sept.

Oct. 31 120 days is up. Aaron loses waiver if he hasn’t signed one year lease.

Typical World:

After the third step, the person has a list of landlords who will accept the Section 8 rent subsidy and it makes sense that they find a place within the 120 day timeline.

Disability World:

After the third step, the person has to begin another complicated process with the County Board of Development Disabilities, to find accessible housing for people with disabilities, match a housemate.

Ball Two in the Air: Medicaid Waiver level of Funding

The housemate must not only be able to get along with Aaron and vice versa, but there will need to be a level of service need for the 24/7 care the two people will require. Because this is funded through the Medicaid Waiver, the housemate must also have a Medicaid Waiver. (There are currently thousands of people in Ohio on the waiting list for Medicaid Waivers—so this is the tricky part.)

This is where the 120 day timeline become freakin’ scary. It is not a coincidence to me that the deadline is on October 31—Halloween.

Ball Three in the Air: Housemate

Aaron has had the same housemate for over thirteen years. They have gotten along great. This was one of the reasons that, when everything else was going wrong, we stayed in the current residential setting. Aaron and Jack are pals. This will be the hardest part of leaving the old house.

Finding a good match will also be the most important and most difficult part of moving to a new house.

As I tell our story of the three houses and housemates we have visited, just remember: I COULDN’T MAKE THIS UP.

House One: rural, rural

We met with the parents of the potential roommate/housemate at Bob Evans restaurant. The meeting went well so we decided to get the two young men together the next day. Their son also has autism and just graduated from school.

The parents renovated the house and it was nice, but extremely small. The location was on the other end of the county.

I’m not sure it would even meet the minimum requirements for a HUD rental because the bathroom was so small and inaccessible. I’m talking sitting on the toilet and touching the tub with your knees. There is no way the staff person could give Aaron a shower–there is no room.

Our hearts went out to this family who were trying to do the best they could. Their son was a lovely person, but was not a good match for Aaron. Aaron sank on the couch and was biting his hands and was overwhelmed during the visit. Later when I begged Aaron to use facilitated communication and tell us anything, the only thing he typed was “bad.”

A representative of a small family run residential service company was also there. She seemed nice, but she couldn’t give me much information about her company other than the owner just had some family issues.

We learned the young man did not have enough funding with his Medicaid Waiver for full-time residential help, so the family brought him back to their house three days a week. This was why they were desperately seeking a roommate with a Medicaid Waiver because then the split costs would allow the two men to live in the home 24/7.

The residential services company and the county case worker come with the house–(one per house). So, when we asked about the case worker we were told the parents really liked him because he shared with them that one of the potential housemates was a convicted felon, and they were so grateful he told them (when he didn’t/shouldn’t have) and they could make sure their son was safe. (RED FLAG).

TAKE AWAY:

Parents are trying to problem solve the best they can to provide for their family.

They wanted to be actively involved in their son’s life.

This family could afford to purchase a small house, near their home.

They could afford to renovate, furnish it and make sure it was maintained with lawn care….

They couldn’t afford the residential care 24/7.

Potential housemates could be convicted felons. Case workers may/may not have to tell you.

Parents could take their child home a couple days a week if the Medicaid Waiver funding was inadequate.

When I asked the parents what their son thought of the 4
day/3 day arrangement they responded: “Well, our son gets confused, he is really excited to be in his own place and would rather stay there.”

When I asked the parents what they thought of the arrangement, they said:
“We have taken care of him for over 20 years with no help. His mother couldn’t work and took him to all his therapies, gave him his bath and entertained him. We never had any help, so 4 days a week is the best it’s ever been.”

These parents were fellow pioneers. Tom and I would have loved if it would have worked out for Aaron and their son to be roommates, but our priority is Aaron—not, would we enjoy being with these parents.

Next post, I’ll talk about the second home we visited.

The bottom line is: WHO WOULD AARON WANT FOR A HOUSEMATE?

COMMENTS

Any thoughts? I love for you to share your stories in the comments and social media.

Have you ever had to blend the requirements of two/three/four agencies?

Is this useful information? OR, is this like watching your parents show slides of their summer vacation in Death Valley?—boring.

Keep Climbing: Onward and Upward.

Mary

Related Posts:

Home More than a Place

Balancing my Son’s Needs and Mine

photo credit: aslinth

This is the 3rd in a series of cases of “What would you do?”

The Case of the Shoes on the Wrong Feet

The Case of the Lourdes Holy Water

What would you do? The case of trash vs. treasure

We usually pick up Aaron, our 36 year old son with the label of autism, every Saturday night and keep him until late Sunday night. We enjoy being with Aaron and this gives the residential staff a break.

Annie, our head staff person, has worked with us for over 8 years. My husband and I always enjoy seeing her and not only sharing Aaron stories, but hearing how her life is going. We’ve developed a close relationship over the years and I count her as a friend.

We’ve been trying to get rid of some old exercise equipment Aaron no longer used, so when Annie started out the conversation with, “The junk man came…” I thought I knew where the conversation was going and was in the process of thanking her until she added,

“The junk man stopped at the house, so I gave him the boxes in the garage.”

“Which boxes are you talking about?”

I asked her if she went through the boxes first. She just said, “They were the boxes in the middle of the garage.” And seemed genuinely surprised I would be concerned.

When I reminded her we had brought some of Aaron’s things from his closet at home to store in the garage, she simply said, she forgot.
My husband tried to lighten up the conversation, but I was stunned.

And actually, a week later, still am.

Whose house is it?

My husband and I have been trying to sell our house. The realtor and home stagers suggested we take down all personal family pictures and move anything we weren’t using into storage.

Now, Aaron had lots of storage space in his garage. I certainly wouldn’t put our stuff in there, but it seemed reasonable to store boxes of Aaron’s things from his room at home.

Personal Items:

I always like to surround Aaron with pictures on the walls in his room because 1) he likes to look at them, 2) they remind him of the people who love him, 3) I want staff/visitors to know something of the people in Aaron’s life, and his personal history.

Yep, the picture collages fit just perfectly in some old boxes and suitcases. I padded them with blankets, a quilt from Aaron’s grandma, and other clothes.

Also in the boxes were Aaron’s little treasures from his life. For instance, there were some music globes that Aaron will play with from time to time and each time he took horseback riding; they gave him a horseshoe the last class. Now, prospective house buyers don’t need to see 12 horseshoes in various colors with ribbons. But, they represented happy memories and Aaron’s achievements.

Also over the years, Aaron had quite a collection of wooden puzzles. We don’t get them out very often because they aren’t age appropriate, but I thought they would make a great present to Aaron’s niece when she turns three in another year.

Also, there was a box of used encyclopedias. Aaron loves to look at these books with pictures, and it is so hard to find them, I buy them from used book stores or yard sales whenever I see them.

And, who knows what else was on the “pile of boxes in the middle of the garage?”

So, what would you do?

The boxes and old suitcases contained stuff that belonged to Aaron. Not mine, not Annie’s, not belonging to the “house.”

The boxes were long gone, the damage was done.

It’s not like they were the family jewels. I bet the Junk Man will only make a couple dollars. They were some used books, puzzles, and old horseshoes for Pete’s sake.

And, since we don’t REALLY know what was in the boxes, maybe some of these “treasures” are in the million other boxes in our other storage units. Maybe some of these things will turn up.

So, what’s the big fuss?

In the comments please share your thoughts and ask your social networks of Twitter, Facebook, etc. if they have any answers.

Comments

Remember there are no “right or wrong” answers.

Please share your thoughts. What would you say to Aaron? To Annie? To other residential staff persons? To Aaron’s case worker? To the administration of the company providing residential services? To anyone else?

What attitudes and messages does this convey for the individual with a disability, the family and/or the culture?

How do you resolve this? How many times do you forgive these mistakes?

As a parent, am I overreacting? What should I have done differently?

As a parent, how do you choose your battles for advocacy? After all, these people take care of your child every day, and Annie has been with Aaron for over 8 years.

Keep Climbing: Onward and Upward,

Mary

Related Articles (real estate, home stagers…):

Turning it over to the Real Estate Professionals and all Professionals

Memory Rocks| Not being objective

The Host vs. The Home Stagers

The Avalanche and an Aaron story

photo credit: Elliotphotos

This morning I saw an egret in our garden.

It stood majestically with its head tilted upward and its slender white body contrasting with the green of the newly planted tomato plants.

The bird looked around for a long minute, and then flew away.

Wait! An egret? This isn’t Florida or South Carolina. The ocean is a thousand miles away.

It got me thinking:

How did an egret end up in our garden? Was there a transportation glitch? Will s/he be back tomorrow? Does an egret worry? How does s/he solve problems?

Thinking, Worrying and ACTION

Like many parents of people with disabilities, I spend most of my days trying to see the world from my son Aaron’s point of view.

Thinking and trying to problem solve;

Worrying I won’t find an answer in time to help Aaron.

Now, I don’t stop there.

After my thinking and worrying,

I take ACTIONS to solve the problems, one step at a time.

This is a full time job. One I didn’t want, one I didn’t plan for, one I have to do every day.

Last week’s problem: Aaron’s 3.5 hour daily Van Ride.

Thinking and Worrying:

Will Aaron have a 90 minute ride today (the legal limit for one way)?

Or, will he and the other 5 people have to sit in the van and wait (and the van ride will actually be 110 minutes) because the staff is too irresponsible to open the doors on time?

Will Aaron chew the collar on his shirt to shreds in the 90-110 van ride? (I have had to buy him a new coat each of the last 3 weeks, he was actually spitting out the metal zipper pieces on one coat.)

Will he bite his hand and draw blood while he is frustrated?

Will he have to go to the bathroom? Have an accident? Get constipated because he is holding it for the 4 hours a day he spends in the van?

Will the van driver sing to him if he starts to get agitated? Will the van driver write Aaron up as a behavior problem?

Will the other people in the van get upset?

Will it be too hot in the van? Too cold?

Last week’s immediate ACTION

Ecological Inventory

I comfort myself that Aaron likes van rides, and Bruce, the van driver, seems to care about him.

After I had my thoughts together, I checked the documentation on the pick-ups/delivery times (the daily chart/notebook I wrote into the ISP), analyzed Aaron’s van behaviors, talked with the staff at both Aaron’s house and day program, made several phone calls, wrote a couple emails about the problem, found out a couple key people were on vacation, make a couple more phone calls….

Immediate Solutions I hoping for:

1. The staff of the day hab center (drop off point) now open their doors on time–removing the extra 15 minute wait time.

2. The van is repaired (storm damage) for our new Goodwill/Easter Seals program and available to pick up Aaron.

3. Aaron won’t have to be on the other van at all with the 5 other people.

4. Aaron will get a direct route to his new program which is 21 miles away, reducing his 4 hour daily ride to 2 hours.

“For every action there is a reaction.”

Long Term Solutions for the Transportation Problem

In the next few weeks, I’m hoping the van for the Goodwill/Easter Seals program is repaired from storm damage and will transport Aaron.

I know the never-ending cycle of thinking-worrying-actions will repeat:

Will the new van driver be as good as Bruce? Will s/he care about Aaron?

Since Aaron and his housemate will be taking different vans, the residential staff will have two different pick-up/drop-off times. They don’t have autism, but they don’t do well with change. (Little humor there.)

A shorter van ride for Aaron means the home staff will have to adjust their work schedules and add an extra half hour in the morning and evening. They will see this as Aaron messing with their day. Since they get paid by the shift, not hour—no extra pay, just an extra hour of responsibility.

I know, I know… I can hear many of you saying: “They work for Aaron, they should do what is best for him.” And, you are right. That is the bottom line and the reason Aaron will have the more direct, shorter route. But that doesn’t mean they will like it, or do it with a smile.

Short-term and Long-term Problems

Each day, I work a little on the long-term solution to Aaron’s residential staff issues. Some problems can be addressed in a week, unfortunately, others take years.

I have written about some of the residential issues before: Our house of cards| Disability style (Part 3) and “It’s not my job.”| Caregivers (Part 3)

And, while I can pull a Scarlett O’Hara and say, “I’ll think about that tomorrow.” My child is waiting for me to fix this.

If I don’t do it, no one will do it.

A Parent’s Life:

I’m writing this because I want to believe the egret was a “sign.”
I want to think the wonder of the unexpected, the unusual, the beautiful will help me focus on the good, so I can stop thinking and worrying about Aaron and the bad things that still need action.

Live for Today

I tell myself—quit thinking and worrying. Just enjoy! Just remember the sight of this regal bird and the unexpected pleasure it brought.

I remind myself–that’s enough thinking and worrying today. Get a cup of tea; take a bath; read a book with a happy-ever-after …and thank God for an egret.

Because even after you finish your thinking and worrying about the transportation issue, there is still the issue that one of the staff people doesn’t give Aaron a bath every night…and the million of other issues that need action.

There will ALWAYS be more battles to fight.

There will not always be more days to just enjoy life.

Maybe my advocacy actions will give Aaron a shorter, safer ride to his day program. And maybe I’ll be able to chip away at the residential problems, and maybe Aaron will get a bath tonight.

I can’t fly away like the egret.

But, maybe today I can stop thinking and worrying–at least for a few moments. And maybe that is the exact ACTION I need.

Your Turn:

In the comments tell us: What are you thinking about? Do you wish you could fly away from your problems? Have you seen something today that was unexpected and brought joy? Do you think and worry? Or, do you think, worry and–take action?

Keep Climbing: Onward and Upward.
All my best,

Mary

Quote: “You can always tell a mother. She’s the one who wears her heart on the outside of her body.”

“It’s NOT my Job”| Caregivers and Direct Care Staff

It is the little things that make all the difference.

For almost 11 years Aaron, my son with the label of autism, has lived with his buddy Jack with 24 hour support staff paid for by their Individual Options (IO) Medicaid Waivers.

In our dream plan and person centered planning, we imagined a caring staff who would not only help Aaron with his direct care needs, but also with community inclusion. We have had some great success stories. Some staff members have become friends and are like part of our family.

Aaron’s individual direct care people are the most important people in his life. He depends on them for everything. We depend on them for everything.

In “Dear Caregivers” Part 1, and Caregivers | Blame it on the Hose Part 2, I talked about our family’s experience with Caregivers and Direct Care Staff. I gave examples of great caregivers who go the extra mile to provide quality care to my son and others with severe disabilities.

This article is NOT about them.
This is about the “OTHER” caregivers and direct care staff.
You know what I mean by OTHER, right?

VACANT

When we brought Aaron back from vacation after Thanksgiving, we found a notice that said the mail carrier had declared the house “VACANT: no further mail delivery.”

Since the guys have lived in this house for over 10 years and there were substitute staff in the house over the holiday, we wondered what could possibly have happened.

We learned the substitute staff didn’t take the mail out of the mailbox. In addition, all the Black Friday ads, newspapers and flyers were all laying in the driveway. No one picked them up, brought them into the house or threw them in the trash. In fact, several were all wet, soggy and had tire marks on them.

Hummm. Obviously, when the mail carrier came to the house it looked unoccupied. There are a couple foreclosure houses in the neighborhood. So, s/he declared the house “Vacant.”

Over the years, I have been to many town meetings with angry neighbors who didn’t want people with disabilities to move into their neighborhood. Because the house rental agreement is in Aaron’s name, my husband and I make sure the house and yard always looks well cared for.

The only solution I can think of is next time we write up an individual service plan (ISP) for Aaron, we will have to include “Staff will pick up the mail, and newspapers from the driveway.”

TURN ON CHRISTMAS LIGHTS

Aaron loves the Christmas lights and decorations on the tree. The first year he moved into his house, Grandma gave him her tree and we gave him all the special ornaments we had saved since he was a baby. Our family tradition was to give him one new ornament each St. Nick’s day to start the season. He had ornaments from us, from his brother and family members, from his teachers and school mates. Some were bought, some were homemade. Aaron loved to take the ornaments in one hand and flip them with his other hand.

Every year our dear caregiver would put up the tree around Thanksgiving. We really appreciated it. Since Aaron spends the majority of his time sitting on the couch in the living room, we felt he could at least enjoy seeing the Christmas tree with familiar ornaments.

Aaron is at the mercy of the staff

Nine out of the ten times we went to pick Aaron up or drop him off, the Christmas tree was never lit. The cord was on the floor and required bending over to plug it into the wall. We even offered to get a longer extension cord if that was an issue. But, even though the staff knew we were coming, they would just sit on the couch directly across from Aaron, and the tree would not be lit.

Next ISP will need to read, “From Thanksgiving until Christmas Day, staff will turn the lights on the Christmas tree from 6 PM to 9:30 PM. so Aaron can look at the lights.”

NOTE: I was going to give a lot of other examples, but this depresses me too much and I think you get the idea.

Taking RISKS

I’m expecting that sharing these stories will come back to haunt me. The agency will give this as an example of how we don’t appreciate their staff. They will probably say exposing stories like this, which are based on my actual experiences, are exactly why no one wants to work with Aaron. Not only is he a tough kid, but his parents are impossible, ungrateful people who are the problem.

In my personal and professional experience, many agencies SAY they want parents to be involved, but they really don’t. They would rather work with people with autism and developmental disabilities who have no parent involvement, no advocates, no one who would ever question what they are doing.

Parent Involvement

Many agencies say they want parent involvement–but what they want are parents who will just tell them they are saints and wonderful. Many agencies just want parents who will raise money for them and advocate to the state and county for increased rates.

I know people with disabilities who have family members who seldom see them. This is so incredibly sad. I used to think it was all the family members fault. Not anymore. It takes persistence and determination to keep on keeping on.

I cannot begin to tell you how hard it is to work with some of these staff people. Tom (my husband) and I have documented staff members who disobeyed the laws and agency rules. Sometimes, to the agencies credit, they did remove them: some smoked in the house, some left Aaron in hot cars while they went inside a store, some yelled at Aaron, some had cars that weren’t safe, some refused to clean bathrooms until the entire house smelled like urine, some asked us for money, some didn’t speak English, some came from different cultures and only thought of themselves–not Aaron.

If some of this sounds prejudiced. So be it!

Staff people have said to me: “But I don’t brush my teeth twice a day, why would I have to brush Aaron’s twice a day.” “I don’t use shampoo when I wash my hair.” “In my culture, we don’t give baths every day.” “I come from a country where it is always hot. So I need the furnace to be set on 80 degrees”–even though this made Aaron sick. The list goes on forever….

First Hand Experiences

I am pouring out my heart here. I couldn’t make up these stories. I guarantee each of these examples actually happened to us. They are all first hand experiences. I hope that by putting them on paper they will begin a discussion about how people like Aaron, who have severe disabilities, can get a better quality of life. That life depends on excellent caring direct care staff and caregivers. They have an important and difficult job. The good caring staff are more precious than gold. We love them and cherish them. We try and support them every way we can.

The OTHERS… well, they can still be nice people with good intentions. We hope they find a job they can love and do well…but not with Aaron.

Keep Climbing: Onward and Upward

Mary

Please Comment:

What would you do if this was your child? What do you think Aaron is feeling when he can’t talk or physically do what he wants to do? What would help? Do schools and adult service agencies really want parent involvement? Are parents just ungrateful?

If you this might help someone, please Tweet it, send it to LinkedIn, Facebook or other social media. Maybe you want to invite other parents to join us and tell their stories.