Unheard Voices

Imagine, if you will, that for some reason, an injury, illness or old age, you required assistance to do the things in life that you normally do. The activities that make your life your own became dependent on someone else’s help. Visualize what it would be like if you had to have assistance to go shopping, or to get groceries, to buy clothes, go to the library, a movie, or a concert. How would it feel if you were dependent on someone else to drive you to those places, help you on and off a bus or drive you in a car?Got the picture? Now imagine what it would be like if you didn’t have a family or friends to help you out, and that the injury or illness became a permanent part of your life. You could hire help, right? Visualize that you live below poverty level on a fixed income, and the government has decided that the only activities that you need to engage in are those that are a medical necessity. No more concerts, movies, or recreation of any kind.That is exactly what is happening right now in Colorado to people with developmental disabilities. With the economic downturn and the continuing vicious cuts to Colorado’s state budget, assistance to people with developmental disabilities has been reduced to a bare-bones, medical necessity paradigm.The Health Care Policy and Finance Department (HCPF), which oversees Medicaid coverage, put a financial cap on funding for services and standardized reimbursement rates for services provided for people in the Supported Living Services Waiver (SLS) and the Children’s Extensive Support Services Waiver (CES) programs, on July 1, 2009. These actions are, in themselves, not a bad thing. Standardization of service definitions, requirements for service provision, and accountability for quality provision of services have helped all service providers for people with Developmental Disabilities to “get on the same page” and to put some order into previous chaos in certain areas of service provision. However, since July 1, 2009, in addition to the imposed caps, reimbursement rates for services provided by these programs have been sliced two more times by two percent each time.The predominant agencies in Colorado which are responsible for providing services for the people with Developmental Disabilities (DD) are called Community Centered Boards (CCBs). They either employ people to provide services or contract with other individuals, companies or agencies to provide services for people with DD. The last dicing of funding resources occurred July 1, 2010, and took the rate reimbursement amounts low enough that many service providers will be unable to continue to stay afloat as they will not be able to compensate employees or contractors and pay for administrative and business costs as well. Employees of many CCB’s have not received raises, have taken furlough days and given up benefits in order to keep their companies viable. Contractors have agreed to take reductions in pay, or have decided to move onto more lucrative and supportive fields of work.Supported Living Services (SLS) is a program which provides the support needed to foster independence for individuals living on their own or with their families. One of the program’s goals is to provide the appropriate services to individuals and their families so that the person receiving services does not have to live in a residential care setting or be institutionalized. According to David Braddock, Ph.D., Executive Director of the Coleman Institute for Cognitive Disabilities, in 2009, there were around 4,181 persons in Supported Living Services in Colorado, which averages out to around 74.3 people in SLS per each one hundred thousand Coloradans.Services offered in SLS are as varied as are its participants. One person may need only some help with money management and developing better employment habits or other employment supports. Another may need help with housekeeping, hygiene or social skills. Yet another may need behavioral counseling and a plan in place to help them remain in society. Some families need help with personal care or respite for their loved ones.In addition to the reduction in rate reimbursements, the cap on the amounts available for services, and the reduction in financial support for people in these waivers, HCPF has also redefined the service definitions that are approved for funding.No longer can a person in SLS go to a movie or a concert if they need paid program assistance to do so. Bowling and bingo are also out, unless the service provider can prove a health related reason for them to be able to go. If they require help to go to a parade, then the service plan had better show how that activity promotes socialization and that is necessary for them to “socialize” for their health. If an activity, an outing or a product is not medically necessary for this population, then it is not being approved as a service. And, heaven forbid, that those SLS clients that live in ski areas want to go skiing with their buddies! Even if they pay for it themselves, the new regulations won’t pay for someone to help them go there and back to their homes. Recreation has been totally taken out of the SLS and CES service definitions and only exists in order to buy adaptive equipment or pay for a fee for an activity that is health-related and monitored by a health professional.In the Children’s Extensive Support waiver, they have denied a certified Yoga instructor program as “movement therapy”, even though the service clearly has provided and supported all of the components of the definition of “movement therapy” and has been helping one particular child to “be in the world” without injuring herself or others. Within two weeks after this child had to stop participating in yoga because it was no longer being reimbursed, she exhibited less motor control, started falling down again, had less body awareness, started running into things and other people again, and has sustained several injuries.Another CES rejection was in response to a request for a portable safety bed for a child who is mobile, knows no boundaries and doesn’t sleep much. The request was made so that the child would be safe at night while the family travels to other places; including to Denver to the doctor, or while camping. The response with the denial was: camping and hotel rooms are not a medical necessity.In 1975, the de-institutionalization for the “mentally retarded” started gaining recognition and energy as a movement. In the following decades, study after study has proved that the people with developmental disabilities could and should have a place in society as a whole. It continues to be an uphill battle to include people with DD in the mainstream population and especially difficult to prove their “worth” quantitatively for those who crunch the numbers. Now that it is not so unusual to see a person with DD bagging groceries, going shopping, or sitting next to you at a movie, the system that worked so hard to integrate this population into society is pushing them back into seclusion because of lack of funding. One thing that is certain, on a strictly financial basis, it costs much less to provide services to people with DD who are living at home alone or with their family or in a small residential setting than to pay for people who are living in an institution. The cutbacks that are resulting in extreme reductions in services are going to have the opposite result financially than the one that is desired.As of last year, there were approximately 4200 adults and 400 children in the SLS and CES programs in Colorado who were living with family members, on their own or with a friend. They have been living healthy productive lives and have become part of our communities. Due to the reduction of funding and the medical-necessity approach to provision of services, the continuing cuts are forcing the clients right back into residential settings.In addition to the reductions in funding and limitations on services, there is now a huge controversy regarding conflict of interest going on at the state level, the results of which will determine whether or not CCB’s can keep case management and continue to provide services. This means that CCB’s potentially may have to choose between continuing to provide case management or continue to provide services for people with developmental disabilities. The results of this split will be devastating for individuals and families who have been receiving both from CCB’s, some of them for decades, some of them for their whole life. Relationships have been formed, trust has been established, and interpersonal connections have been made. Those aspects of case management and service provision are grossly ignored by the people making the changes and the rules.Another “movement” on the horizon that will drastically affect the population with DD, is what is called the “Accountable Care Collaborative”, which is intended to “redesign the Medicaid program to provide a focal point of care/medical home for all clients – particularly for those with complex needs,” according to Sandeep Wadhwa, MD, who was, in June, the State Medicaid Director and Chief Medical Officer. Sounds great, doesn’t’ it?This plan will divide the State of Colorado into seven medical home regions. According to Wadhwa’s presentation at the Alliance June Training Summit, the Accountable Care Collaborative will “develop regional accountability for clients’ health status and affordability”.Proposed Regions 2,3,5,6,and 7, make some sense as to how they are laid out on the Front Range. However, almost half of the state will be in Region 1, which includes all of the western slope and spans across the middle north counties, including Larimer, Grand, Eagle and Summit. It runs all the way to Archuleta County in the south, and Montezuma County in the SW corner to Moffat in the NW corner.Have you ever driven from Ft. Collins in Larimer County to Cortez in Montezuma County, or even just to Grand Junction in Mesa County? It takes a full day in the car to get from one of those areas to the other. Very few people with developmental disabilities drive a car, own a car or can even ride a bus on their own (that is if there were buses throughout the region). The transportation issues alone for this “region” are unfathomable in their difficulties; and that is without even mentioning the weather or the mountains that divide this state. If you bring in the economic variances, the lack of rural services, the extreme cultural diversities that are widely affected by location, you have an unimaginable challenge as to how this region will actually be able to “invest in care coordination” and “develop regional accountability for clients’ health status and affordability”.It is crystal clear to me that in every area I have discussed, no one is asking the people who will be affected the most by these actions. No one is taking into consideration that these are people with needs, just like you and I, and their needs are even more ‘special’ than yours and mine. Those of us who work the “front lines” with people with disabilities are committed to provide assistance that supports their quality of life and maintains personal dignity. I personally don’t know anyone who does it “for the money”, because, frankly, there isn’t any. CCB employees’ and contractors’ pay rates start at minimum wage and range approximately twenty percent below the pay of State Employees, including teachers, with comparable jobs duties. Our commitment to provide services for people who need them is because we know they can’t do it for themselves.Every funding cut, service restriction, and mindless restructuring of service system will continue to take away another piece of these people’s lives, until there is no quality of life left for them. So then, what good will it do to make sure they have every medical necessity available for them? When there are no more opportunities to be useful in the community, for social interaction, art, music, for any fun at all, then what? Who speaks for these unheard voices? And the bigger question is: who is listening?

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