Open Letter to Our Elected Officials

Dear ;

There is a crisis in Connecticut looming with regard to the supports to people with mental illness and intellectual disabilities. Misplaced liability, over regulation, lack of resources and a system with conflicting and overlapping requirements has created an untenable situation; a situation which necessitates immediate change. If we fail to act, providers will close shop, their employees will leave for better opportunities and vulnerable people will die. In short, the system will cease to function.
I have worked in the human services business for nearly 25 years. During this time I have seen significant change and the lack of change as well. My opinions come from my personal experience and observation. While I still work in the field, my opinions are my own and I write this as a taxpayer and a voter.
Since the first days of deinstitutionalization the state has gotten it wrong. In the beginning, when medicine and psychological interventions made it a realistic option to support people in the community, rather than in institutions, vulnerable people were discharged to… nowhere. There were no community supports, no safety nets and little quality of life. The result? Throughout the 1970s and 1980s there was a rising tide of disabled people in homeless shelters, living on the street, in nursing homes and in prison. Finally, someone got the bright idea to put resources in place to help these individuals to be successful in the community and, surprise, they were.
However, systemic negligence of this sort still exists today. Our policies and procedures do not support success, but rather they court failure. Here is why:

1) Wrongly placed blame
What the system has done is to take some of the most difficult people on earth, people that could not be helped by armies of men and women in white coats with degrees, and given them to the care of people who are well meaning, but not as educated and certainly not as well paid. Then, when something goes wrong, the professional second guessers blame the staff, when most of the time, barring blatant abuse or neglect, it is a systemic issue.
This situation was exacerbated several years ago by a Hartford Courant investigative article regarding deaths which occurred in the DDS ( then DMR ) system. While probably well intentioned, what the paper failed to recognize is the difficulties that can exist in caring for some of these people. We are talking about people who are suicidal, highly medically fragile or who are dangerous to themselves. The Hartford Courant article created a wide ranging sense of paranoia in the service delivery system. Mortality review committees were created to investigate “untimely deaths” and, of course, they are almost always going to find something wrong. If you look for a problem, you find it. While these committees have a place, their function seems more about assigning blame rather than improving the system.
What no one says is, “thank you for taking care of these people. You gave them a good quality of life and they lived longer, and better, than they otherwise would have.” Our system focuses on what is wrong and ignores what is done well

2) Misuse of, and lack of, funds
One of the main keys to good care is well trained, well motivated and decently paid staff. Unfortunately, this too is an area that has seen systemic neglect. While it may appear that some of these caretakers earn a living wage, their actual buying power has decreased significantly over the years, as inflation has fast outpaced COLA’s. Thus, a person today is actually making quite a bit less than they were in the past! In its infinite wisdom, the state saw fit to not provide a COLA increase to this group this year, only further compounding the problem. Private agencies now compete with large retailers and the like in terms of attracting and retaining staff, whereas we require more skilled and semi-skilled workers.
The folks who are being paid the best are those that work for the state. There is a dramatic difference between what state employees get in pay and benefits over private sector employees (State employees make about $21/hr whereas the average private provider employee gets paid about $14/hour! ) Ironically, the state services are often of less quality than that of private sector providers ( just ask state inspectors ). State employees get paid decently for one reason: they belong to unions. If the private sector were to unionize then, perhaps, better wages and benefits would ensue, but at the same time this would erase most of the cost savings reaped by privatization.
There is also the issue of misallocated funds. 70% of the funding goes to support 30% of the people (in the DDS system at least), while only 30% of the funds go to support a sizeable majority of people needing resources. By the way, the 70% is the funding for the state system and not the private provider system.

3) Regulation does not fit reality
The private sector model of supports, both residential and therapeutic day services, is based on the Social Learning Model. The social learning model focuses on the abilities of people and not their disabilities. Rather than seeing them as sick needing treatment, they are people with unique abilities and challenges. In this model the emphasis is on normalization, education and support in environments which are as home-like, or as work-like, as possible
However, as we experience an aging population this group has more and more medical care needs, which have not been accounted for or budgeted for. As more medical care is required, the medical model has crept more and more into the lives of private caregivers. This requires nursing and nursing assessment.
That’s all well and fine in a hospital or a convalescent home, but in a group home the nearest nurse can be miles away, or as close as the nearest ER, which is the primary care that many of the people I have identified receive.
The Connecticut Nursing Practice Act states that only licensed people can do certain tasks and the top of the food chain, besides doctors, are RNs. There are supposedly 55,000 RNs in Connecticut, but most of them are not practicing. Thus, we strain a system already under strain. The system demands RN’s of which there are few. We demand LPNs, which are also in short supply and who cannot really do anything in absence of direction from an RN anyway. We make all these demands, but the system does not pay for them. What we have is barely trained non-licensed people increasingly doing the work of licensed medical personnel.
While these staff can do some of the functions they need to ( such as take vital signs ) more significant care calls for a nurse and since there is no nurse physically present, we end up taking these clients to emergency rooms, which are also under significant strain and the most expensive sort of care. Of course, this cost is borne by the taxpayer.
Furthermore, since our regulations are so complex, many doctors are not familiar with them and moreover do not want to be bothered to jump through all the hoops we need them to jump through, in terms of red tape and paperwork. The end result? Less providers willing to help and even more challenges to service delivery.
The Nursing Practice Act also creates another complexity. Because a nurse has trained a non-licensed care provider, if that employee makes a mistake, the nurse can also be ( and are ) held responsible. This is the case even if the nurse is not physically present.
How many nurses do you think want to participate in this form of arrangement? It is noteworthy that this is not the case in other states. It does not make sense to hold someone else responsible for the actions of another.
It is also important to note that there are also vast discrepancies between state agencies. For example, under the DDS system medication administration is strictly controlled, whereas under DMHAS there is little training and the rules are not enforced, even though the exact same tasks are provided and the same regulations should apply.

4) Complicated, overlapping and contradictory methods of payment
Currently, in the DDS system at least there are 3 separate methods by which private providers are paid 1) By contract ( the traditional system) 2) By the clients having portable funds, and 3) Fee for Service. These systems exist concurrently. It is so complicated that even DDS employees do not know all the intricacies of how they intermingle. This has caused some sharp criticism by the public of DDS operations (please reference the Country Club Woods Circle group home ).
The issue is even more challenging for private providers. If a client with portable dollars leaves a group home then the next person filling the vacancy must have a similar amount of money. If not, then the provider is not able to properly staff the home. You can easily have “contracted clients” and clients with portable dollars in the same home, making nearly impossible to properly budget for the peoples needs.
Another issue involves when a client has to go into the hospital ( which, given our population, can be often ). If the client is out of the group home for more than 15 days then the provider ceases getting Department of Social Service payments for that individual until they return. It’s not like a private provider can rent out the bed space or lay-off staff. How are providers supposed to deal with this financially?
The complexities and intricacies of this problem are more than I can delineate here, suffice it to say, that the system is broken and in desperate need of repair.

5) Poor Planning
The people in the system are getting older. As they do, their needs increase. The state has neither prepared for, nor budgeted for, what is a clear and simple reality. The costs to support people with special needs only ever increases. However, today, we are being asked to cut our budgets!
While I am not saying that inefficiencies cannot be found in the system, there is very little, as the system was never properly funded in the first place. I wonder what the correlation is between funding cuts and death in the population of people with special needs?
I believe there is a direct and positive correlation. If people do die, please keep in mind what I said above, it will NOT be the fault of the direct support employee.

In closing, the system of service delivery to our most disadvantaged and vulnerable people needs to be streamlined, re-organized and re-evaluated using a healthy dose of common sense. The private provider system, on which much of the service delivery system is based, is seriously threatened by red tape and misguided ideas. The state is supposed to provide the “Arch of Oversight”, however the arch is crumbling.
I am writing to you to urge you to take leadership on these issues. I write to you because I am tired of seeing a system that can do so much, but which falls so short of the mark. As a person with a Masters Degree in Organization and Management and as a part time college professor, I would use this system as an example of how to NOT run an organization. If businesses were run this way they would be out of business.
We privatize so that we can take advantage of the American ideals of entrepreneurship, ingenuity and creativity inherent in private organizations; and because it is a cheaper and more versatile approach to this type of health care than is government and bureaucracy. Let’s not kill it with the same system it was designed to enhance.

Thank you for your time and attention.

Respectfully,

Antony S. Whittaker