Good morning and thank you for being here with us today.
I am the father of a perfectly lovable son who is disabled. My son Georges, age 27, has multiple disabilities and intractable seizures. He is non-verbal, non-ambulatory, and he requires one-on-one care on a 24 x 7 basis to ensure his safety and to accomplish all the simple functions of life: rising from bed, dressing, eating, and personal hygiene. Safety is of most pointed concern as he does not comprehend danger and must be protected from self-injury and/or environmental dangers such as fire or collision. Georges rocks back and forth in his wheelchair and could easily fall over if no one were present. He must be constantly attended to assure his safety. Georges’ condition requires this one-on-one 24 x 7 care throughout his natural life.
Georges receives day habilitation services 5 days per week. Day habilitation services include physical therapy to maintain joint and muscle flexibility and strength, speech therapy to reinforce communication skills as well as feeding skills, and occupational therapy directed toward development of functional living skills which we all take somewhat for granted. An important component of day habilitation is the community orientation aspect, which enables him to participate safely in the community. For Georges, that entails desensitizing himself to the noise and hubbub of the community, which can be quite agitating and disorienting.
Georges is a cherished member of our family. My wife and I care for him at home. He is the innocence in our lives and his care is a labor of love. His smile melts our hearts, not in sadness but in joy for his life with us. We have every intention of providing his primary personal care in our home as long as is humanly possible.
Georges is healthy and has a relatively normal life expectancy. We are all too aware that there will come a time when we will not be physically able to carry him about and provide the care that he requires. He weighs 100 pounds, and it is a challenge to physically pick him up and carry him from place to place in our home. With this in mind, two years ago, we placed Georges on the OPWDD waitlist for residential services. As such services are quite limited for people who are non-ambulatory and who require one-on-one 24 x 7 care, Georges remains on the waitlist in the hope that appropriate facilities will become available for him somewhat coincident with our diminishing ability to provide care. Our hopes have faded, though, since there has been little if any residential development for years now, and the budget again contains no new funding for development of 24 x 7 residential services.
We have growing concerns whether even the current level of services can be sustained if the Governor’s proposed cut is enacted. OPWDD funding has already been cut by $167 million over the past 3 years, and services have been cut to the very bone. This current budget proposal would cut state funding for OPWDD by $120 million. Such a cut would result in the loss of an additional $120 million in federal matching funds. OPWDD services simply cannot sustain such a cut and still provide essential services of high quality. It will take years to recover from this cut, if recovery is indeed possible. Meanwhile, the cut will make development of 24×7 residential services extremely unlikely.
The proposed cut will no doubt result in the closing of some of the smaller provider agencies. And as staffing costs represent 75% of OPWDD provider costs, staff reductions will occur at the surviving agencies. On a personal level, proper staffing levels are essential to the one-on-one care that our Georges requires. We worry that he won’t have the staff assistance he relies on for all his basic needs and for his safety. From the broader perspective, these cuts will decimate the quality and availability of OPWDD services for all New York State’s citizens with developmental disabilities.
I would like to highlight two other particularly frightening components of the proposed budget, which are: first, allowing non-profit commercial insurance companies to provide services to our population and, second, transferring much authority for OPWDD services to the Department of Health (DOH).
OPWDD services are currently undergoing conversion to a managed care system, called the “People First Medicaid Waiver.” OPWDD’s intention has always been to provide managed care utilizing entities with extensive developmental disabilities experience. Commercial insurance companies lack such experience. Moreover, they provide services through a medical model geared to curing people. This model is not appropriate for people who are not ill. Instead, people with developmental disabilities require a habilitative model, which provides life-long, comprehensive services, ranging from residential services to social interaction to on-going therapeutic services. For example, Georges will always need physical therapy to develop and maintain his mobility. We believe that any managed care entity must be held to the original OPWDD standards.
The proposed transfer of certain OPWDD administrative functions, such as rate setting, to DOH raises similar concerns. While DOH has demonstrated capability in managing providers operating under the medical model, they do not have the knowledge base to oversee and set policy for OPWDD services.
Transition to managed care is not a simple process, and it has created some turmoil in the system. This transition, coupled with the proposed 6% cut to OPWDD, the inclusion of generic insurance companies in the People First Waiver, and the shift of authority from OPWDD to DOH, could create a “perfect storm” that threatens to sink the “ship” of services on which our most vulnerable citizens depend for the very basics of their lives. Such a storm would disable the care system that we have so painstakingly developed over the past 40 years.
Yes, we spend more than many other states in caring for our most vulnerable. As a result, New York State leads the nation in the quality of care provided to my Georges and 126,000 other New Yorkers with developmental disabilities. We should not be seeking to reduce our expenditure to some “average of other states.” Instead, we should rejoice in being number one in providing the essentials of a dignified life for ALL citizens of our state.
We are deeply thankful that the state legislature is moving to fully restore the proposed 6% cut. We ask that you reject the other budget proposals I have discussed in order to assure that services for people with developmental disabilities will not be diminished. We hope that you will stand firm in your support for our most vulnerable population.
Thank you again for being with us today and for your commitment to our most precious population.