If I were Qualified to Be Considered As The Incoming Director of

Ohio Department of Developmental Disabilities

Renee Wood

With the new incoming Governor coming on, in 2019, there will be changes in Department Directors.  One of the changes will be Director John Martin who, for 9 years, was head of the Department of Developmental Disabilities.  This will be a true loss because he served the Department and the people well.   Who will the new governor choose to replace him, I haven’t got a clue, but I know it won’t be me!  However, that doesn’t mean I can’t pretend, and layout what my goals and objectives would be.

My Goals Would Be:

Vision: To go beyond what’s required in the CMS Rules for Home and Community Based Services (HCBS) to have the lives of those who receive HCBS, through Federal and State dollars, mirror the lives of those without disabilities.  Several service systems would need to be restructured to ensure best outcome for all.

• Living, working, recreating, etc, in the community will be an expectation from the day of disability onset. To this end, Independent Living Skills Training (ILST) starts day 1 of onset of disability, whether that’s infancy or age 21.  This will be age appropriate skills training, whether it be learning to hold a bottle or resume building, or social skills, or directing one’s own care.  Even the most severe can learn skills of smiling when pleased and frowning when not pleased.  Monetary incentives will be given for every skill acquired.  Skills will be assessed by an independent contractor who’s versed in DD, but has no affiliation with the provider of the skills training.  This training cannot be in lieu of academics, but can be integrated into the school day once a skill is acquired.

 

• The individual’s happiness, contentment, and fulfillment trumps safety. If a person is not happy or content, more than likely they will engage in behaviors that are not safe for them, nor others around them.   The above training will minimize the potential for safety risks and address them as needed.  However, whether disabled or not, everyone has times in their lives when they’re just not happy with what’s going on.  A change needs to happen to ensure that the opportunity for happiness and fulfillment exists.  This might entail some calculated risk, but a life lived in safety without being happy or fulfilled is just existing.   Every attempt will be made to understand the individual’s dreams, desires and needs and make them happen with an eye on safety, but allowing potential of risk.

 

Structural changes – housing (ICFs, developmental centers, group homes, supported living and individual dwellings with supports), dayhabs and sheltered workshops

Every individual, whether disabled or not, has the right to a sense of belonging, to be loved and cherished by others, to give their time and talent to the things that interest them, to relax and do nothing sometimes, in an environment that offers some sense of safety (not hostile).  Most non-disabled find this in the larger community.  However, it must be recognized that these things are significantly more difficult for people with DD to experience within the greater community, either because others without disabilities feel uncomfortable with DD in that they don’t know how to approach these individuals. Predators looking to benefit monetarily or sexually from befriending someone with DD, or just plain prejudice and hatred at not wanting people with DD in sight.  Since this is the reality for many with DD, we have what I classify as “plantation hugging”.  This is where, when slaves were set free, the greater community was so hostile to them, that living like slaves on their familiar plantations seemed a far safer alternative.

We have people with DD and their parents tied to what they know – I call it “shelter hugging”.  Although it’s an unfree environment where non-disabled are paid to maintain and control people with DD, at least one is able to form relationships with others like themselves.  I recognize the need and the right to congregate with others like oneself, and that opportunity should always exist, however it should not consume the majority of one’s life, for it stunts the growth and reinforces societal beliefs that people with DD need to be set apart.  Next I will present baby steps to move us away from segregated environments into safe engagement with the community.  This would entail bringing the greater community into our environments.

• First, we need to recognize that the spectrum of abilities for people with DD is vast, from those who hold doctoral degrees, but who physically need assistance with ADLs, to those using respirators, who have very limited cognition, are medically fragile and need total care. The system doesn’t make a distinction between those who may benefit from ICF from those for whom an ICF admission would be detrimental to their well-being.  In fact, to receive an HCBS DD Waiver, one has to meet an ICF level of care.  This made sense when Waivers were created because it was an alternative to going into an ICF (institution).  Now that community services are the way for many who really wouldn’t benefit from institutional placement, it’s time to re-write (including the Federal regulations) the level of care for Waivers.  Keep the same requirements, just don’t call it ICF level of care.  Then change the admission requirements for ICFs to people requiring extreme medical intervention with no community alternatives and an IQ under 60.  Example; someone using a wheelchair, with an IQ above 60, who just needs assistance with ADLs, would no longer qualify for ICF placement.

 

• Encourage and provide some financial support for existing ICFs (who are in danger of closing doors due to the above policy change), to redo the ICFs into 1 and 2 bedroom accessible apartment units. This would not just meet the standards of roll-in showers, but also include ceiling tracks for lifts and remote monitoring capabilities for individuals who may need this service, to ensure everyone has some alone time with onsite staff readily available.  Three fourths of the apartments will be rented by people with DD.  The other fourth by those in the general public who will be well vetted to ensure a safe and non-hostile environment.  Community gathering space is encouraged with 1 prepared optional meal a day.  Current ICF owners would have to choose whether they want to maintain and run the building, or provide direct care – they can’t do both.  The other will be contracted out.  A subsidy would need to be sought to ensure only 33% of the person’s income goes towards rent.

 

• Currently, under the Fair Housing Act amended in 1988, newly constructed apartments built with 4 or more units, are required to meet minimum accessibility requirements. This Act includes fair market as well as government funded buildings.  Of course government housing is also covered under 504 of the rehabilitation Act and offers even more stringent accessibility requirements.  These are fair market apartments that offer basic accessibility which would work for many people with disabilities, and with a few modifications, could work for most people with disabilities.  These fair market units are underutilized by people with disabilities who cannot afford fair market rent.  Instead of developing affordable accessible units, we first need to locate and document all accessible units in the fair market stock.  We need to make the argument to HUD, as well as CMS, “If you want people integrated into the community, here are all these accessible units in integrated communities, not being used by those who need them.  How about sending some funding to subsidize these units and solve some of the accessibility issues in housing”?  We also should try to find local dollars to subsidize these integrated, fair market, accessible units.

• Set up transitional housing. These will be places that have 6 to 8 people in emergency situations, who want to remain in community settings, but currently have no housing available.  These facilities our temporary stays of 3 months with 1 time extension for a difficult situation.  Most of these emergencies will be due to the loss of a primary care giver.  These will be very active places with housing specialists versed in the community’s housing stock and knowledgeable on available funding for rent subsidies.  If the individual does not currently have Waiver services or other community supports to make living in the community possible, there will be other specialists who are knowledgeable on community supports.  They will work diligently to set up appropriate supports to meet the individual’s needs, so when housing is set, the individual will be ready to move in with the necessary supports.

 

• Just as important, these transitional housing units will be places of healing and training. It must be recognized that most individuals who need temporary transitional housing, have gone through some kind of trauma, either loss of a caregiver (parent/family member), fled from an abusive situation, or had extreme behaviors which forced them to be relocated from their residence.  These facilities will have professionals trained in trauma care to help individuals start the healing process.  They will be welcoming places filled with activities and a low staff to individual ratio.  Independent living training needs to be personalized for the individual.  Assistive technology will be introduced.  There will be daily classes in budgeting, conflict resolution, how to self-direct one’s care, how to form healthy and safe relationships, travel training, grocery shopping and nutrition, self-care, transfers from wheelchair to commode and into bed, how to dress oneself even when in a wheelchair.  People with similar disabilities, who have mastered these skills, will be contracted to assist in trainings.   The goal is to create self-confidence and independence to minimize the need for supports as much as safely possible.

 

• Day habilitation centers need to change into community recreation centers for all. These centers need to be on a voluntary participation basis whenever the person chooses, rather than the current mandatory (expected) participation on a daily basis, once someone signs up for dayhab.  Centers will be funded with Waiver dollars only if a certain percent of people utilizing the facility are non-disabled.  This will encourage the development of interesting activities such as, basketball (young guys with mild DD love this and they will be playing with non-disabled as well), dance classes and preforming art, movies, card and board games, which might draw the older population in, and much more.  Staff will be readily available to assist people with DD to participate fully and to trouble shoot if behavioral issues should arise.  Also, to ensure that individuals with DD have opportunities for participation in activities within the greater community.

 

• Sheltered workshops will become typical work places, and have several different purposes.  To assist all people (disabled and non-disabled) with job development skills.  A training center for janitorial work, personal care training, as well as other occupations needed in the community.  Some will become industries operated by businesses such as Amazon, Walgreens and other businesses.  Businesses will be responsible for training and managing all employees regardless of ability.  Job coaches and personal care assistants will be on paid staff to help out when needed.  People with disabilities will be hired at all ranks in the business and work side by side with non-disabled counter parts making equal pay.  Recruitment of disabled skilled workers with higher education will actively be sought and encouraged to fill upper management and middle management positions.  Trained staff will ensure safety without getting in the way of interpersonal relationships between employees.

 

Simplify the DD Waiver system and increase the number of direct care workers

The system has become heavily bogged down with rules and regulations which discourages people from entering the direct care industry for little pay and lots of headaches.  Most people who truly want to do this work, do it because they care and want people’s lives to be better.  When doing the work, the workers develop relationships with individuals and family.  These relationships foster loyalty to the individuals they care for as well as fostering better quality of care. These workers usually learn the individual’s needs and wants while on the job.  When the system becomes more about crossing every T and dotting every I, or else.  In doing this, you’ve lost the true nature of the caring industry and even worse, you’ve made the individual needing care, a commodity, rather than a person.  Agencies are notorious for standing in the way of relationships developing in order to maintain control over the caree and the carer.  I believe it is the fear of the carer getting to know the person well, so therefore knows his wants, desires and also when the person isn’t getting the required care, they can and will feel a need to help advocate for what they need or want.  This becomes a liability to the provider agency.  If you can keep the person as just a body to be maintained, and make the worker focus more on doing paperwork correctly in ordered to get paid, you’ve successfully took the focus off of quality care, to quality of paperwork.  The worker quickly learns that no one’s there on a weekly basis to check the quality of care that person’s actually getting, but by God, they’re going to check the quality of paperwork on a weekly basis.  No one wants to work under these oppressive conditions.

Of course, background checks, abuse registries, common core requirements such as hand washing, body mechanics and disability sensitivity training should be required regardless, to ensure a safe environment for everyone.  Other training should be geared directly to the individuals one is working with.  Paperwork should be checked and ask for clarification when needed, without fear of penalty for innocent errors.  The system will continue to lose direct care workers because of over regulations (such as EVV requirements), rigid paperwork requirements and very little pay, especially for agency direct care workers.  This needs to be remediated immediately.

• We need to look at the regulations and policies and see which ones truly ensures quality of care, and those developed solely to cover thy ass in the rare event of …..
• Foster relationship building which will make workers loyal and responsive to the needs of the individual rather than the needs of the agency.
• Increase pay rates that are ensured that the vast proportion will be passed on to the agency direct care workers.

 

The DD Waivers will combine into one Waiver.  Level of care will determine the yearly amount of the Waiver for a particular individual.  The Waiver will be self-directed in that the individual or their family will determine services needed, pay rate for providers and management of direct care workers, not to surpass that predetermined dollar amount connected to individual’s level of need.