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The generation gap in care for developmentally disabled Ohioans
Officials are debating how to spend $316 million that could be provided for people with developmental disabilities
by WKSU's STATEHOUSE CORRESPONDENT JO INGLES


Reporter
Jo Ingles
 
Gov. Kasich's proposed budget sets aside $316 million for developmentally disabled Ohioans
Courtesy of Governor Kasich
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The care of Ohioans with developmental disabilities has changed dramatically through the past few decades. Gov. Kasich’s proposed budget provides $316 million for developmentally disabled Ohioans. But as Ohio Public Radio’s Jo Ingles reports, there’s a generation gap of sorts now, especially when it comes to funding.
LISTEN: The generation gap in care for developmentally disabled in Ohio

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A few decades ago, people with developmental disabilities were often placed in large institutions that were supposed to meet their needs. Many of those facilities have been shuttered. And money and services are being provided for programs to help developmentally disabled people remain in their homes and community settings.

Gary Tonks is executive director of the ARC of Ohio, an advocacy group. In a recent forum at the Columbus Metropolitan Club, Tonks explained a generation gap of sorts has developed in the philosophy over how best to care for people with developmental disabilities. He says older Ohioans still want state and local dollars to go to group homes and institutions that they created for their children years ago.

“T,their children weren’t allowed to go to public schools. They weren’t allowed to be competitive in the real world. So we built on our citizens of color and all of the lawsuits and fights that they fought and created a system out of necessity,” Tonks explains.

A different view
Now, Tonks says, many younger families view developmentally disabilities very differently. The younger parents no longer want facilities for their children. They don’t want the segregated day facilities that are available through agencies like Goodwill. They want more individualized services and programs to help people live independently in their communities.

Tonks says these days, state and federal dollars are largely being directed toward those services.

Person- or facility-centered
“It includes what we wanted. It includes things that are person centered, not facility driven. Yet we have families who are concerned that if I give you the choice of living independently, how will that affect my choice when I like Goodwill Sheltered Workshop and I like the intermediate care facility? How does that affect my choice? And I think we need to answer those questions for those families,” Tonks says.

Tonks says the current system of funding for services is based on deficits -- what you can’t do and what you don’t have. He says it should be based on abilities and how to help each person live to his or her full potential. As an example, he tells the story of a young man with disabilities who worked at the home and garden megastore, Lowe's.

“They employed him in the garden department. And he was struggling. And they actually talked to him about why he was struggling. He says it was because the color of the flowers is not good. It doesn’t look good. They redesigned their garden department so that the coloring of the flowers was more pleasing to him and their sales went up,” Tonk tells the forum.

Looking at waivers
The director of the Ohio Department of Developmental Disabilities, John Martin, says the state’s policies on disabilities tries to continue to provide money for institutions and facilities for those who need them. But he says the state is also experimenting with waivers with the flexibility to help people succeed in less restrictive environments.

“It is a waiver that doesn’t have as much funding in it, but it has more flexibility in it with the idea of giving people more choices. And we hope that waivers like that become part of the future as well, offering real cost-effective alternatives to some of the real expensive comprehensive services that exist today,” Martin explains.

The idea behind these new waivers is that money can be provided for a caregiver for a few hours or to make small improvements and repairs that can help a developmentally disabled person stay in their own home. As care for developmentally disabled Ohioans continues to evolve, proponents hope the cost will decrease as communities put more emphasis on what these people can do and how they can help to sustain themselves.
Listener Comments:

I absolutely agree with the statement above posted by anonymous! In my opinion it seems that every move that the state makes in regards to Ohio's most vulnerable citizens is based on money, without consideration to what these individuals truly need and desire, including their legal rights to their choice! I understand that a cost effective solution is what the state would desire, but you must remember that you cannot balance your budget on the backs of these most vulnerable citizens expecially when that interferes with their civil and constitutional rights!!!


Posted by: independent provider and family (44221) on May 26, 2015 12:05PM
I don't understand how a few hours a day of caregiving can possibly help a person who lives with complex/multiple disabilities. Many waiver recipients totally depend on their home health care providers to provide them access into their communities. In fact people with complex developmental disabilities have to rely on their providers to even get out of bed, get dressed and toileted, eat, shower and help them in out of their wheelchair and provide them with transportation !! I have no comprehension of this "theory behind waivers" that John Martin is talking about.


Posted by: Anonymous on May 26, 2015 11:05AM
(1) Wouldn't it be just lovely if all the MRDD folks were able to live at home with an (a) emotional balanced loving parent(s), (b) not abusing drugs or alcohol and (c) with sufficient intellectual capacity to understand complex medical matters, (d) with the energy of youth to cope with the daily care of a MRDD - adult. (2) Wouldn't it be lovely if all MRDD adults were intellectually and emotional capable of securing employment with understanding employers. (3) Wouldn't it be lovely if the MRDD's parents didn't age and develop medical issues of their own often as a result of the STRESS caring for an adult (a man as an example weighing 250 pounds who throws temper tantrums similar to a 3 year old). As parents age, they can no longer provide care for the aging MRDD person who often have the before mentioned behavior issues, (such as hitting the parent, screaming, etc.) requiring diaper changing, wheelchair transfer, bathing and feeding their adult child, often with seizures, etc... the stuff that the public is completely unaware. Mr. Tonks should be applauded for his efforts with respect to the younger MRDD folks, but he appears to have forgotten the older, frail MRDD folks.. Mr. Martin suggestion that waivers for a few hours a week is good for the MRDD folks, and even better from a financial standpoint for the State. Does Mr.Martin truly believe this or is he under the influence of others who neither care about nor have any experience with the MRDD population? The Georgia experience, cited above, is chilling - and not surprising - an unexpected 10% increase in the DEATH rate when moved from an ICF facility. With respect to the OLDER Ohio parent population preferring the ICF and group home model - they have gained the wisdom missing from the younger parent population. But, this will come. As an aside, since it was not an issue of this interview, is the sad fact that securing staffers to care for aging adults in a group home (who are in the process of developing dementia as well, whose jobs are often -bathing, dressing, passing meds, cleaning the house, changing diapers, withstanding resistant constant behaviors, some physically violent , often screaming outbursts, transferring to wheelchairs, etc. etc. earn at wage of $9.00 per hour - caring for 3-4 MRDD adults. Compare this to the MRDD fella pushing carts at Walmart for $9.00 hour. Mr. Martin may be unaware of the next crisis which may indeed be reported in the press sooner than later - and that is the acute shortage of staff willing and able to work in a group home. Lastly, has Mr. Martin and Mr.Tonks reviewed with the 88 County Boards the percentage of MRDD folks with the capability and/or potential to secure employment in the community on a sustained basis - the goal of the younger parents? Thanks for listening.


Posted by: Anonymous (London) on May 26, 2015 7:05AM
Children and families should have a choice regarding care. Facilities should be an option for those who choose that type of care. Just like the elderly wish to live together, people with developmental disabilities may want to live with each other in a facility. Others may want to live in the community. Please, Ohio allow families to have options.


Posted by: T. Ann (Delaware) on May 26, 2015 7:05AM
Ok.. what about the individual who loves where she works (sheltered employment) and lives at home, but does not have waiver and been told she wont because of long waiting lists in Ohio. She is not totally independent and will always need supervision with meals, schedules etc. We have no ICF here in our town and even if I wanted her in one. Do I just ship her off to the abyss in some other city where she knows no one and no one knows her? She cannot stay in our home even if we wanted her to with out help with the waiver monies she may never get! So how is that fair to her? We want them to be independent but... I guess as parents we have to never die. Its makes no sense to me. Some will and can be independent and some individuals have extended families that will step up to the plate. What about those who cant be totally independent and have no family that can take on the responsibility? Answers please !


Posted by: Jane Johnson (zanesville) on May 26, 2015 6:05AM
What happens with the adults and children who have severe behaviors on top of their intellectual disabilities? The people that are not ready to be in the community? And for a lot of the individuals in workshops, that's their only means of a social life as well. I know many that are in community programs now and the complaint I hear often is that no one talks to them, like they're outcasted.


Posted by: Allison (Ohio) on May 26, 2015 5:05AM
Ms. Ingles, Many reporters look to places that seem to care and defend persons with intellectual disabilities. Mr. Tonk is not one of them. He is totally biased in favor of getting rid of Intermediate Care Facilities (ICFs). These type facilities care for the most vulnerable of the intellectually disabled. They often have multiple disabilities that are profound, and cannot be addressed by a small group home. In fact, many of these persons have tried living in small group homes only to have that supervisor beg the ICF to take the person back indicating a total inability to care for the person. After the first year of closures of ICFs in Georgia, there was a 10% UNEXPECTED death rate of the 470 persons displaced. Georgia is beginning to rethink things. "The ARC" talks a good game about independence and getting involved with competitive employment. However, most persons living in ICFs don't even know what money is. Most have disabilities that would make competitive employment impossible. Picture a person who has an intelligence of a three year old, is incontinent, cannot walk, must be fed, must use an oxygen tube, and has explosive behavioral outbursts. The ARC is self serving, and supports the numerous companies that mean more money for them (regardless of the adverse impact to the resident), and more members for The ARC. These personal beliefs are supported by many objective persons. I suggest you contact http://www.disabilityadvocacyalliance.org/ for the truth.


Posted by: H Capps (South Carolina) on May 26, 2015 5:05AM
Gary Tonks totally misrepresented the issue. Yes parent advocated for programs to be developed and the families of people with developmental disabilities continue to advocate for the needs of their family members with the most significant disabilities. It is not about providing a waiver service, which by the way is not all it is cracked up to be. My brother needs extensive supports. He is an ICF now where he is happy and healthy, guess what Gary Tonks he is more included in the community because of the staffing levels and supports the ICF has in place.


Posted by: Kathy Wojciak (North Ridgeville) on May 26, 2015 4:05AM
my husband and myself adopted A child 37 years ago that had been severely abused and caused him brain damage. We have a waiver and it is suppose to help with his care but what w are finding it is costing us money as with this waive if we don't pay out of our pockets for Guardianship rights, when he is out with his provider our son makes all the choices and some are very damaging to him. He has the mind of a four year old but if he wants to buy x rated things they can't say no. If he chooses to drink while out with provider they can't say no, if he wants to purchase inappropriate items they can't say no. This has to be changed half the stuff he blows his money on he only buys because he likes the color or feel of it. They either need to allow the parents be able to tell the providers what is appropriate for our own child or provide guardianship papers for us. The parents need more say so as we are the ones taking care of them


Posted by: Tanya (ohio) on May 26, 2015 4:05AM
My daughter was in two waiver homes. Her needs could not be met with her profound mental disabilities and profound autistic behavior. The staff were not trained to deal with these type of disabilities. She needs one on one therapy and medical care 24/7. Wavier homes cannot afford the qualified staff to take care of these type of individuals. I'm beyond tired hearing my daughter's current home, a state funded facility, an institution. It's a beautiful community.


Posted by: Anonymous on May 26, 2015 1:05AM
I am also trying to understand how a few hours a day is going to help someone with multiple disabilities when they need someone else's hands to assist them with just their basic needs....makes no sense at all!!!


Posted by: Anonymous on May 26, 2015 1:05AM
You have lied to everyone. There are 40,000 people waiting on services and homes like the Developmental Centers (which by the way aren't institutions) as you are trying to make people think they are. Thwy are for people with profound Mental and physical disabilities who can not survive in the outside world. We the families know what's best for our loved ones and we choose to keep them where they are.


Posted by: Pam Rambo (Dayton, Ohio) on May 26, 2015 1:05AM
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