PLANNING THE GOOD LIFE

 Planning for a good life for your loved one is a journey. Carolyn Wheeler -- who has spent too many hours to count around kitchen tables assisting families to plan for the future -- will highlight key questions to consider as you plan and tools that may be useful along the way. An adult sibling will also share her journey to plan for a good life for her brother when their parents are no longer able to provide support for him.

Join HCDDS  to be energized and supported in your own planning process!

Register at http://www.hamiltondds.org/register.

This event will take place on Zoom - Register today and you'll receive a link to join the event in advance.

Carolyn B. Wheeler is a native Kentuckian with over thirty years of experience in program development, training and advocacy on behalf of people with developmental disabilities and their families. From 1990 to the present, she has been employed on a variety of projects with the Human Development Institute at the University of Kentucky. She is also, on a voluntary basis, a Power of Attorney and Representative Payee for a woman who has an intellectual disability, receives a Social Security retirement payment from her own work record and has an ABLE account. In 2017, she received the Carl D. Perkins Service Award from The Arc of Kentucky and the Willie Byrd Legislative Award from KY APSE (Association for Persons Supporting Employment First). Carolyn was appointed by State Treasurer Allison Ball in 2019 to the Kentucky Financial Empowerment Commission. Carolyn has a passion for encouraging and supporting people with disabilities and their families to plan for a good life that includes figuring out the “hard stuff” when key family members are no longer able to provide day to day assistance.

Funded by the Ohio Developmental Disabilities Council under the Developmental Disabilities Assistance and Bill of Rights Act.

SSI, Resources, and Webinars

 

".... and it was hard to get him to do things."

My heart goes out to this mother who put her trust in staff working at an adult daycare in Cincinnati.  Shee thought the staff  were experienced at caring for her son with autism.

 The only thing that RMS got right in the article is how challenging it is caring for a child or  adult with severe delays in development (which is why they are placed in a special workshops and care centers.)

RMS, according to their mission,  is a "family of human service organizations providing residential, vocation, and recreational support to individuals with developmental disabilities."

What surprises me is that no one at RMS  communicated their concerns to the mother beforehand  about his behavior. It was only after she went to the press that suddenly there was an issue with his behavior. If  he fell, it should have been documented. If there was an issue, it should have been documented.

Aren't they suppose to be the experts?

One thing to look at before considering a respite or day center is to ask about the experience and training staff have with adults who are on the spectrum.  If your son or daughter is on the spectrum, you want someone who has experience so they can avoid the triggers.   You don't want them endangering themselves or others, so what kind of protection services for clients mixed up with other clients with behavioral plans?

If there  is a behavior plan, for example, ask what staff  know about avoiding triggers without impacting quality, purposeful, and dignified care.

My experience with respite, leisure, and recreational care  is that there are some really awful places out there in Cincinnati driven solely for profit.   I mean, "run, don't walk" awful.

Make sure you go with a respite or day care with a really good reputation.  Redwood Therapy Center in Northern Ky, St. Joseph's, Stepping Stones,  Metzcor, Sunny Spot, and ABS  are a few to name off the top of my head.  These are the places that repeatedly come up in community conversations about offering quality care. They hire staff with experience so they know how to guide behaviors that can be difficult. They will communicate with parents/caregivers daily about any unusual behaviors they see developing in your son or daughter. They will be concerned because they care about what kind of day your son or daughter is having away from home.

What do you look for?

Look to see what the adults are doing throughout the day.  Are they guided through activities based on their abilities? 

Ask about the experience the staff have with the population of adults with special needs and on the spectrum.  Where did they get their training?

Observe how they are touching clients.  Are they grabbing arms or gently guiding?

What are you hearing?  Kind and calming language?

Is the room welcoming? Do you see cabinets with activity bins, games, and adaptive equipment?  Are there tables and comfortable chairs?

Most importantly, do you see staff directly working with clients in small group activities?

How many staff are in the room directly or do they count "staff" who are in the offices or on the premises?

Ask staff directly how long they've been working there?

High staff retention is a good thing.  The more staff you see around the room working or guiding clients,  the better the organization.

It's really important that you drop in as much as you possibly can.   Even if it's just for a minute to say hello and see what they're doing.

Sure, things are not going to be  perfect. But, anytime you drop in, you should see your loved one doing something meaningful with a group that is guided by a staff.

It should feel and look  like they are being welcomed and in the best of care.

It's what they deserve.

Three's a Charm

Elisabeth came into the world with a 5 year old sister who was just starting kindergarten and just learning about her new and very fragile baby sister.  She was ready for Elisabeth and had "Big Sister" training and a t-shirt to prove it.  Elisabeth also is three years older than her baby sister.  She was the baby sister who put Elisabeth into giggles when she cried and the baby sister who insisted on pushing Elisabeth's wheelchair as they got older.

When we talk about future caregiving for Elisabeth, both of her sisters say without any hesitation they will take responsibility.  The idea that Elisabeth would live anywhere except with her own  family is beyond their scope of understanding.  They think this way because they know the way of the world.  Both sisters  spent a few years working with marginalized populations  transitioning into the community.    From their perspective, they think they can manage the caregiving responsibilities while also having their own careers as long as there are quality day facilities and community programs  that parallel their working hours. As long  as Elisabeth has access to funding.

For most of their childhood, I stayed home.  I realized I couldn't "have it all" working outside the home and had no other options left because  Elisabeth was aging  out of her  specialized daycare at Redwood Therapy Center and was ready for the school district and the world of IEPs, FAPE, and LRE.   Elisabeth's needs grew beyond what I could do working full-time away from the home.  She wasn't sleeping. She was requiring extra trips to the doctors, surgeries, therapies, and we didn't have the resources to hire a helper or nanny to care for her while I was at work.

It was a charmed life staying home.   Elisabeth's dad seemed to be more relaxed knowing there wouldn't be anymore  interruptions at work.  And his job changed so he could have a little more flexibility as my back up.   It was almost perfect, really.  It was like all those prayers that people say on Elisabeth's behalf were all working.    The girls all found their niches -- art club, music club. band, theater, soccer, softball, basketball, track, scouting, band, cheerleading, and community service clubs.  Then they said goodbye to Elisabeth and went off to college to earn their degrees and their place in society.

Then, somewhere in this charmed fairy tale existence, things went awry.  Suddenly the wear and tear of caregiving started showing and I found myself hanging from this very thin thread about to snap.  The reality of her leaving her school community sunk in. The truth is, it's not easy being a caregiver full-time. So,  when I started  looking at her life after graduation, I began seeing the same anxieties and stresses  that I see in other families like our own.  We don't have to say a word because we know that  "I know" look.   We know.  We can't do it on our own.  We need help.

Today, I am scheduling a meeting with a reputable respite care center for adults like Elisabeth.  I've watched other very strong and capable warrior moms do the same.  It's hard. I'm making plans for Elisabeth's future because she needs her own independence.  She needs to find her own niche and get acquainted with the staff and activities to bridge into community life.  And her sisters need an option for Elisabeth, too.  It's just something I know I have to do for all three of my daughters because I know the way of the world, too.  And the way of the world for Elisabeth is that she needs her own community.

As long as we have funding for quality day and overnight  respite facilities like Metzcor, Stepping Stones, and  St. Joe's that are run by  quality skilled-nursing and tender-loving care, I think Elisabeth will be just fine on her own when her dad and I age out of our caregiving responsibilities.  Her sisters will still be part of her life and community bridge building, but they won't have to do it on their own.

Add caption

Lawsuit seeks community-based options for Ohio's disabled

Lawsuit seeks community-based options for Ohio's disabled but also endangers a population of adults currently receiving services through ICF settings offering safe, quality, and dignified care.



One family I know with  two children are currently receiving services through ICF settings.  Although the lawsuit is on behalf of families going without any options, waivers, or services, it runs the risk of forced closings of ICFs  that appear to be the only option available for a population of children and adults who require specialized services to be integrated into community life.



As it turns out, there are very few community-based options for adults other than going into group homes and jobs.  However, if your son or daughter's disability requires more care and cannot work, there are few options as it is.

Girl From the North Country

I listen to a lot of music because it provides comfort during times when I am at loss for words. Anytime I start writing about  Elisabeth's transition, I am at a loss for words because I feel so much sorrow.   I experience sorrow because I know she is losing a valuable connection to her school community.  So I am listening to  music from a time I was a teenager transitioning into an unknown adulthood.   There were choices I made back then that empowered  me to be the person I am today.

As my own daughter of 21 years is making her own transition into community life,  I wonder what she is drawing upon to bridge into adulthood.  Does she realize what's happening?  Or is she like most people who take it one day at a time without realizing they're on a pathway through time?

Elisabeth is non-verbal but she is very expressive using sounds, facial cues, and body language bouncing between happy when things are going great  and discomfort when things are not so.  She is perfect in every way except that she is unable to determine the outcome of her life.   She cannot self-determine her life without someone being there, by her side, to make it happen beginning with getting out of bed.

She is also transitioning into community life thanks to the rescue efforts of Hamilton County Developmental Disabilities Services.  Up until December, we were without a clue until an announcement was made by one of her transition advocates that funding was available to help her bridge into the community.

The challenge for all of us is defining for her what her community life will look like after she leaves her school community since she cannot determine this on her own.   She loves familiarity and closed spaces.  She loves navigating through the halls in her school in her gait trainer  using the narrow hallways to form a direct pathway into which she must pass through.  She loves the echo of basketballs bouncing on wooden floors.   She loves ice cream, polished nails, new hair cuts, and sharing her life with anyone pushing her  wheelchair.    

She has always responded with a determination and purpose  at Bobbie B. Fairfax School where her environment was designed for her developing abilities and creating  her own milestones. She has developed an ability to do things in this school because  it was an environment that allowed her  abilities to develop at her own pace.  It was a school that understood milestones for one student is going to look very different for  another.   There were people who challenged her to do what most people take for granted.  In just 63 days, that pathway through the hallways and her life for the last 21 years will be a memory.

Looking for a similar environment is very difficult. The hallways, the sounds, and the creative, compassionate, and dedicated people who were part of her progress cannot be duplicated.

Or can it?

With everything changing in the next 63 days, it's hard to imagine how we're going to "reproduce" the same environment to continue getting the desired responses from her.   We've had little taste of what happens when things change too quickly for Elisabeth.  For example, we noticed  dramatic changes in Elisabeth during summer vacations becoming   agitated and  frustrated because her routine had changed from the school year.  So we stayed busy doing things everyday to keep her happy and responsive.

It's hard to imagine what will be going on in Elisabeth's mind when she realizes she's not going back in September which is why transitions are so important for this population of adults wearing a one-size-DOES-NOT-fit all disability label.

Today, I met one of Elisabeth's former pals from school who made that transition a few years ago.  She is enrolled at an adult daycare that looks like a huge warehouse on the outside, but inside has spaces allowing  interactions to take place between staff and clients.   There was a familiarity shining  in her eyes as I called  out her name and recalled where I knew her from.  As I called out the  names of  her friends and teachers and reported how everyone was doing, she reached out to me.  She smiled.

 Driving home, I tried to imagine how my daughter would fit in that open space, without any walls to guide her in gait trainer. I hope that as the specialized services  change  in Ohio, she'll continue experiencing the same confidence and independence  in  workshops, programs, and activities where she can respond directly.  Workshops, programs, and activities that will give her a sense of purpose, dignity, and belonging to a community that values her special abilities.

I imagine that one day someone will recognize her somewhere out in the community and hopefully be  blown away by her progress seeing  the same determination and purpose in her responses for which she was known. Hopefully, they'll see a  spirit that sparkles when her name is being called out for her attention.  I hope she will respond  in a way that is genuine and meaningful for  her.

"I’m a-wonderin’ if she remembers me at all
Many times I’ve often prayed
In the darkness of my night
In the brightness of my day" 

Report on Community Solutions

Report on Community Solutions in Ohio

Ohioans with disabilities rely heavily on institutional care and sheltered workshops to live in quality, purpose, and dignity. While there are many families who need specialized services, work shops, and medical care 24/7,  there are  group of people who see it as  isolating  and restrictive.

With so many lawmakers and politicians making decisions, it's important to read reports like this one to help educate voters why we still need specialized services because our State of Ohio is in such turmoil over the interpretation of the Olmsted Act.  Just remember, whatever cuts are made at the state level will impact what happens locally. This happened in 2000 when Gov. Taft closed most of the MR/dd daycares/schools claiming it duplicated what school districts offered.

While the system undergoes major changes in how our families are served in the coming years, please pay attention to the groups, politicians, and lawmakers appearing to advocate on behalf of our children and adults.

What Trickles Down ...

Yesterday, I had a major breakthrough in the principal's office at my daughter's school. It was the first time I cried in a very long time. I actually wailed.  My fears, worries, and anxieties about being the primary caregiver  for my daughter for the rest of her life finally sank in over the summer.    I say this because after spending the last 15 years attached to my daughter relying on me physically, emotionally, and socially, I saw no real independence for her.

 This reality hit me like a ton of bricks as we are approaching her last year of school. She is aging out of the school district and will lose  community connection through services we received through the school district.   In exactly 10 months from now, 180 days, she will be graduating from school with no future except to spend the rest of her life doing what we've been doing the last 15 years without the benefit of a school community which at least gave her a break from me. Although we have a transition team in place and community advocates at the table, we  don't have a real clear vision for what Elisabeth's life will look like after graduation.  We don't have a destination.  We don't have enough funding to support her with purposeful, quality, and dignified  care.

In Ohio, most of the funding has dried up for waivers and federally protected, state certified adult daycare and recreation/rehab workshops due to a ruling on the Olmsted Act of 1999 guaranteeing community integration for all adults with disabilities.  Waivers are additional funding for families who keep their adults at home but need community integration.  Waivers have been unavailable for the  Ohio families because there is no state, federal, or levy funding except in extreme emergencies.

Recreation/rehab day centers/respite care centers, for example, also  rely upon waivers to keep their organization going because most people can't afford to pay privately.  Weekly cost for most rehab/recreation daycare centers is estimated to be more than what most people make in a week at job so many families without waivers keep their adults at home.

 Disability Rights of Ohio is also  threatening lawsuits for any agencies or services that appear to isolate or segregate people from the community. As a result, many agencies and organization are being forced to turn away waiver funding unless it complies with the ruling.  What Disability Rights of Ohio fail to recognize is that local communities are not equipped with sufficient resources to integrate all of our adults with severe disability labels into the community.  It took at least 40 years to develop and implement programs helping people integrate into community life according to their ability and now they want to close everything down and redirect this population directly into the community.

 It's the trickle-down effect in action.  Local recreation and rehab workshops that were designed to help integrate people into community life lost federal and state funding over the years and had to close or limit enrollment to adults with special waivers.  As funding declines over the years, so does participation and enrollment.   And declining enrollment gives  politicians an excuse to defund more services and agencies because it looks like there is no need for it.  It's a vicious circle.  Caught in the middle are caregivers, advocates, agencies, and related services  struggling to find placement for their adults in the community.


Caught in the middle of this very messy business are caregivers like myself who have no option but to keep their adults with severe disabilities at home.  I remember what it was like in 1972 for people with severe disabilities without a destination or  resources to be fully integrated into their  community so that's why I was crying in the principal's office. I was crying because I knew that's the direction in which she was heading.

Where Is Our County Leadership Here?

What Bad News Bears...

Back in December of 2014, I sat in the Hamilton County Developmental Disabilities Service's (HCDDS) planning meeting overwhelmed with grief hearing about the change in direction of their mission serving children and adults with special needs.  I'm speaking of the population of adults and children who are severely disabled, delayed, unemployable, and  relying on "traditional specialized services" to live in quality, safety, and dignity.

 The reason why I was the only parent there, I suppose, is because the meeting took place when most family caregivers and community advocates are coming home from work -- caregivers who already have exceeded their personal and sick time at work meeting the challenges of raising children and adult with disabilities requiring 24/7 care. I can go. They can't.

I am a stay-at-home and full-time caregiver for my now 21 year old daughter. She is small enough to transfer so I can still lift her wheelchair in the car and take her places without facing the barriers that the majority of families and advocates face trying to advocate for their children and adults. I left the workplace in 2000 after my daughter aged out of Redwood Daycare  and could not find a  replacement after-school daycare in Ohio that had medical and therapy staff to meet her needs.

According to the new HCDDS  mission, to remain in compliance with the State of Ohio due to the interpretation of the "Olmsted Act 1999 and "Employment First Initiatives," HCDDS  can only help people who are employable.  Due to funding cuts and rerouting of funds from the State of Ohio, they can only help people who are able to undergo special training by the State of Ohio and their agencies.  They can  no longer provide traditional specialized services on-site that once safely bridged a medically fragile population into the community through daycare, recreational rehab, and workshops.  Their traditional support organizations and services will be no more.

It  all started with the Olmsted Act 1999 ruling guaranteeing our family and friends w/ disabilities to be fully integrated into their community. No one is quite sure who in Ohio has chosen to react to this ruling and why it's being used to take away traditional specialized services -- services that in many cases were identified through this thing parent caregivers and advocates  call "choice."  No one has seen any increase in federal, state, and local funding for how these changes will take place, either.

For the population of families and friends with severe disabilities requiring 24/7 care and  currently receiving specialized services appearing to "isolate" or "segregate" them from their community, the Olmsted Act is being interpreted as an excuse to de-fund current  support agencies and services that many families still rely upon.  So any program or service not meeting the  Olmsted Act ruling will go unfunded.  It is unfortunate that a ruling created to protect our family and friends, to help integrate them into community,  is being interpreted in Ohio to take away valuable funding and resources for those in need of specialized services for respite, daycare, overnight medical care, recreational rehab, transportation, and other important services that give purpose, quality, and dignity.

 It's  happening too quickly to feel the impact right now locally, but after attending the HCDDS Planning meeting early in December the writing on the wall was clear:

 1) Children and adults in Ohio are only valued if they are employable or if they can live without traditional specialized 24/7 care;

2) Parent and extended family caregivers, agencies like HCDDS, and service coordinator/advocates are not valued in the State of Ohio because they are never given time or additional budget to act,  prepare, and plan for the changes impacting this population of children and adults with special needs requiring 24/7 care.

What compounds this situation is that HCDDS  operates on a budget that has not increased in the past 11 years, yet their caseloads have increased by 80% creating longer waiting lists for many different services.  With no additional funding coming from the state or locally,  the waiting list for waivers, for example, for people requiring 24/7 care and specialized care has not budged since 2008. Ironically, children and adults on the HCDDS waiting lists, will be staying at home and not participating in the community which puts us right back where we were before the IDEA ACT 1973.

With every year, every email, and every meeting I've attended,  the bad news has been coming swift and steady from the State of Ohio and locally.  Even with the many spins I hear  "how this is really great news for Ohioans with disabilities," it's still means less funding locally.   Less funding locally means services dwindling locally which means there will be less options for people like my daughter who has been on a waiting list for services because there is no money. 

Just in the past 9 months, I have received a thousand email messages drawing my attention to meetings, workshops, bootcamps, resources, and other training programs that will help me be a better advocate for my daughter and help me find services.  For each one I attended, I learned that unless my daughter can take a bus independently and attend a special workshop for job training, count her change, and do the most menial task, she is not valued for being who she is -- a 21 year old with a smile that will light up the room if you say hello or give her a high five. A 21 year old who likes to be pushed in her wheelchair on a dance floor with disco lights and on a basketball court by her

Cheerleader buddies.

This summer, my mailbox is full with even more invites to meetings from which  experience means more bad news from the State of Ohio taking away more services that took over 30 years to create and put into action for children and adults with disabilities.  After 30 years developing  the agencies  offering specialized services, programs, and workshops, imagine what the lines will look like when those services are taken away.   Where will our adults and children go? According to the Olmsted Ruling, into the community -- a community where the big agency once perceived as the "go to place" for all things "disability" hasn't increased funding in 11 years.  A community where there is an 80% increase in caseloads and growing.    According to the Governor, into jobs due to his "Employment First Initiative."  An "Employment First Initiative" that means everybody means everybody, including my daughter because that's where the money is going -- job training.

Very recently I receive another invite to yet another workshop.  More bad news, I'm sure.  Notice that on the bottom is a disclaimer, "This session will not address county-specific concerns." Well, most of the issues here locally rest upon what is happening at the state level.  Most of the specialized services we relied upon over the years locally were provided in part through state funding. So why can't that be addressed? 

Olmsted Act and Employment First Initiative is Bad News in Hamilton County Ohio

I sat in the Hamilton County Developmental Disabilities in Ohio Planning meeting last Monday and became overwhelmed by grief over the change in direction of their mission serving children and adults with special needs. I'm speaking of the population children who are severely disabled and delayed and unemployable. The population that relies on "traditional specialized services" because they cannot be fully mainstreamed into the community.  It appears our children and adults in Ohio are only valued if they are "employable" or if they can live without traditional specialized services due to changes that were introduced by Governor Kasich of Ohio with his "Employment First Initiative" and the Olmsted Act ruling.






It's all happening too quickly to really understand how all these changes will directly impact our family and friends with special needs. It is hoped it is explained why HCDDS was not permitted to increase their budget over the years even though their caseload increased by 80% particularly to prepare for this "employment first" mandate which has been further compounded by "Olmsted Act" ruling.






In Ohio, there is a population of families and friends who are losing specialized services due to a loss in funding at the federal and state level because of the Olmsted Act. This Olmsted Act 1999 ruling guarantees that our family and friends will have placement in their community. Unfortunately, it's being used to take away valuable resources from other people who really need specialized services to maintain their independence and quality life.


Currently federal and state are claiming they no longer have to fund specialized services because it "isolates" and "segregates" children and adults from the community. Basically they are placing that "one-size fits all" template over a very large population of children and adults with very different special needs and disabilities. However, there are many children and adults who required specialized services BECAUSE it is the only way they can participate in society. Some have needs that are so severe, they need highly specialized services.










Where will they go? In Hamilton County, clearly you are only valued if you are "employable" according to this new HCDDS mission. If you are not employable, ironically you cannot not be integrated into the community.