Hinkle, Prior & Fischer recently submitted testimony to the Senate Health, Human Services and Senior Citizens Committee in support of New Jersey Senate Bill 2600, which proposes important protections for families affected by the New Jersey Division of Developmental Disabilities’ “Return Home New Jersey” (RHNJ) Initiative. The firm’s testimony is below.
January 16, 2015
Via Regular and Electronic Mail
Senator Joseph F. Vitale, Chair
Senate Health, Human Services, and Senior Citizens Committee
State House Annex
P.O. Box 068
Trenton, New Jersey 08625
Re: Senate Bill 2600, Written testimony of Paul Prior, in support of bill
Dear Senator Vitale:
Mister Chairman and distinguished members of the Senate Health, Human Services and Senior Citizens Committee, I am writing regarding what the New Jersey Division of Developmental Disabilities calls the “Return Home New Jersey Initiative” (RHNJ) and in favor of Senate Bill 2600 which is scheduled for the Committee’s consideration on January 26, 2015. My name is Paul Prior. I am an attorney in private practice with the firm of Hinkle, Prior & Fischer, and for the entire duration of my nearly 20 year career, I have continuously represented people with disabilities and their families.
As written, S2600 will give families the protection as well as the tools they need to protect their children or siblings with intellectual and developmental disabilities. Families are now at the mercy of DDD and are far too often intimidated and pushed around by DDD in the agency’s implementation of RHNJ. If enacted, this legislation will help level the playing field for families.
It is important to acknowledge that DDD has a difficult duty to coordinate and fund services for thousands of individuals with intellectual and developmental disabilities. Furthermore, I believe the people who work for DDD sincerely want to improve the lives of people with disabilities and their families. Finally, I believe DDD’s and DHS’s leaders truly want to design and improve upon systems which provide the greatest good to the greatest number of people.
Regardless of these beliefs however, bureaucracies established to provide services often get in their own way and initiatives conceived with the best intentions often end up harming a great many individuals. Such is the case with DDD’s “Return Home New Jersey Initiative.”
The State’s primary objective in terminating out of state placements and forcing the return of people with severe disabilities to New Jersey, is to save money. The Division contends that by forcing individuals to return to New Jersey, the State can easily access federal Medicaid funds which will cover a portion of the cost associated with the new placement. The State’s goal of maximizing federal Medicaid funds is a laudable one. However, the manner in which DDD is going about it is deeply flawed. The sudden and unilateral termination of funding to out of state placements – some of which have been funded by the State without complaint for half a century – is not only bad public policy and poor planning, it is unnecessary and cruel.
My firm has worked with dozens, if not scores of families, where DDD is unilaterally attempting to terminate their placements. In most instances the individuals served have been placed and funded by DDD for 20, 30, or more years. Individuals served by out of state programs typically develop strong bonds with program staff and other peers. Individuals have strong ties to the local community through community based activities, houses of worship, work, and the security that comes with a long-standing familiarity with ones surroundings. Parents also acquire a deep sense of comfort and peace of mind knowing their child will remain in an appropriate, consistent, and familiar place long after they have died. To disrupt and undermine these invaluable characteristics simply because it is administratively convenient to do so and when a solution which accomplishes everyone’s goal is readily available; is not only cruel, it borders on inhumane.
S2600 contains many important exceptions to the Division’s RHNJ initiative which will help families better advocate for and protect their children or siblings. The inclusion of a “grandfather clause” as well as provisions which allow for health and safety exceptions to a change in placement are vital components of the bill. Such provisions will force DDD to work more collaboratively with families and will give families greater control over the process than they currently have.
While the Division may say that it works with families throughout the process in a cooperative manner, such representations are highly overstated. In most RHNJ cases, DDD will aggressively pressure families to return their child to New Jersey by engaging in the following pattern: DDD will inform the family and the placement provider it is going to stop paying for the program in 60 or 90 days. After obtaining limited, often insufficient, information about the person with a disability, DDD will suggest the family go see a specific group home in New Jersey. In many cases, the initial placement suggested is often completely inappropriate either because the home is not yet acquired, renovated or ready to receive residents in the time remaining before funding is cut off. In other instances, the provider agency may not be accustomed to working with the unique needs of certain types of individuals particularly where medical or behavioral issues are present. Sometimes the home will have a mismatched peer group or staff are not always familiar with the unique needs of the individual. Moreover, DDD usually fails to offer a day or vocational program at all. In like manner, DDD frequently fails to obtain family input before making such offers, fails to develop legally required transition plans, or refuses to permit legally required trial overnight visits at the contemplated placement. Adding further insult to injury, whenever families challenge DDD on these issues, the Division unfairly accuses the family of dragging its feet.
In other instances where DDD does sit down with families under the pretense of gathering information in a comprehensive way, DDD will ignore what the family has to say, and refuses to incorporate input provided by staff who work with the individual regularly. The Division will alter the content of written plans subsequent to such meetings, will schedule meeting without checking with the family first, and fails to give families more than 1 or 2 days’ notice for meetings and then refuse to reschedule them. We have been told by more than one out of state provider that DDD staff have directed them not to speak up at meetings and not advocate for the person with a disability. In short, families are being bullied by DDD. What should be most troubling to all is if this is how DDD behaves toward families protected by strong advocates, it frightens me to contemplate what the agency may be doing to those families who are not. This is the very reason why S2600 is so important as it will give families some protection against the heavy handed tactics of DDD.
In addition, I believe S2600 thoughtfully addresses the State’s fiscal concerns. The bill’s inclusion of cost-neutrality exception will allow DDD to transfer a number of individuals back to New Jersey, assuming it can meet all its other burdens, while at the same time empowering families to use their own resources to preserve the status quo. Such an approach makes common sense and fosters a public-private partnership. However this Legislature should still encourage DDD to access federal funding for out of state placements whenever possible as DDD has done in the past. If it chose to do so, DDD could expand its Medicaid waiver allowing the use of Medicaid funds for out of state placements. As far back as 1999 New Jersey obtained approval from the Federal Government to use Medicaid dollars to help fund a limited number of out of state placements. Specifically, the Federal Government approved the use of Medicaid Waiver dollars to fund placements in the Commonwealth of Pennsylvania. As recent as 2011 DDD was exploring the possibility of expanding the use of Medicaid funds for out of state placements as a cost saving measure to New Jersey. Although there have been changes to federal Medicaid policies, those same policies permit states to ask the federal government to permit the use of Medicaid funds for settings similar to the out to state placements in question. To my knowledge, DDD has not attempted to do so with respect to any of the out of state placements it works with. So DDD’s supposed inability to use Medicaid funds for out of state placements is in all likelihood, a self-inflicted wound. Whether as a result of poor planning on the part of former DDD and DHS leadership or as a result of an unwillingness on the part of current leadership to think more creatively and flexibly, individuals with disabilities and their families should not shoulder alone the burden and suffer the consequences for the State’s failures in this regard. While it may be easier on DDD to simply unilaterally terminate out of state placements, since when do we sacrifice the health and safety interests of our most vulnerable for the sake of bureaucratic ease and convenience?
Lastly, it is misguided public policy to transfer individuals who are happily placed and consume the limited number of available placements located in New Jersey when there are thousands of people on a waiting list who are living with aging parents and who are in desperate need of residential placement. If S2600 enables a greater number of individuals to stay in their current settings, then such a result will allow some of the thousands of families on the waiting list to obtain the residential placement in New Jersey they so desperately need.
I thank the Committee for taking up consideration of Senate Bill 2600 along with this very important policy issue affecting so many of our most vulnerable citizens. I encourage the Committee pass the bill out of committee for consideration by the full Senate.
Sincerely,
S. Paul Prior
cc: Senator Fred H. Madden, Jr.
Senator Richard J. Codey
Senator Robert M. Gordon
Senator Ronald L. Rice
Senator Jim Whelan
Senator Dawn Marie Addiego
Senator Diane B. Allen
Senator Robert W. Singer
Or 
Hinkle, Prior & Fischer attorneys are available to speak to your organization or constituents on a wide variety of relevant disability topics. 