On July 12, 2000, at 10:00 an Informal Conference was held in the Flanders Community Services Office of the Division of Developmental Disabilities. In attendance were Frank and Alycea Tetto and their daughter Maria, the appellants, Rita Kopacz, Maria's home instructor, Roberta Schwartz, an advocate for Maria, from Dawn, Inc.. In attendance from the Division of Developmental Disabilities were Lauren Choclack, Maria's case manager, Mary Giorlando, acting Morris County Supervisor, Wendy Zoccola, acting County Administrator, Morris County, Linda Gately Administrative Practice Officer for The Upper and Northern Regions of the Division and Darlene Yannetta. The Informal Conference was convened to address the appeal of Mr. and Mrs. Tetto, parents and guardian for Maria Tetto. They are appealing Maria's placement on the Non Urgent Community Services Residential Waiting List Status. They are requesting the Maria be placed on the Urgent Residential Waiting List.

Mr. and Mrs. Tetto provided the following information: Mr. Tetto stated that Maria should be on the Urgent Waiting List because Maria's disabilities originate from a Traumatic Brain Injury. According to Mr. and Mrs. Tetto, time is a key factor in Maria's rehabilitation. Mr. and Mrs. Tetto stated that in Traumatic Brain Injuries, the first few years after the injury is when therapies are the most beneficial. Mr. and Mrs. Tetto would like Maria to be placed through the Self-determination Program so they could arrange for Maria to receive the therapies now when they feel she would most benefit. They feel that this is what Maria needs most. They stated that she is receiving physical therapy, speech therapy and occupational therapy from the Kessler Institute. On August 17, Maria will start receiving Cognitive Remediation from Headways. Mr. and Mrs. Tetto would like to arrange more therapeutic programs for Maria and would do so if she were able to participate in the Self-determination Program. Mr. and Ms. Tetto are requesting that Maria be placed on the Urgent Residential Waiting List so that Maria will be placed on an initiative in the near future so that she may choose the Self-determination Program.

Mr. and Mrs. Tetto want to hire aides, through the Self-determination Program, that are trained to work with individuals who have traumatic brain injuries. They would like to have some one who will reinforce Maria's therapies. Mr. and Mrs. Tetto feel the home health aide that had worked with Maria was not very helpful because the aide was primarily Spanish speaking so it was difficult for Maria to communicate. Maria communicates by pointing at letters and spelling out words, the aide had difficulty reading English, so the home health aide did not understand Maria when she tried to give the aide instructions for her care. Another problem the Tetto's reported was that the current aide was too short to help Maria transfer. She could not position herself correctly to help with Maria's transfers.

This meant that Mr. or Mrs. Tetto had to be present at all times when Maria needed to be transferred. Mr. and Mrs. Tetto feel that home health aides that are not trained for working with people with Traumatic Brain Injuries can not meet Maria's needs. So Mr. and Mrs. Tetto feel that they must provide Maria's care, exclusively.

Mr. and Mrs. Tetto stated that the current level of care that they provide for Maria causes them to suffer physical and mental pain. Mr. Tetto said that when he assists in Maria's transfers he aggravates a back injury, causing pain to radiate down his back and through his legs. Mrs. Tetto says that she is suffering from exhaustion from Maria's need for constant care. Mr. and Mrs. Tetto both report depression. Mr. Tetto said that he is depressed because he can't go to work due to Maria's need for care. Mr. Tetto says neither he nor his wife sleep well due to the need to care for Maria during the night.

Mr. and Mrs. Tetto stated that the current situation is hurting their entire family. They stated that they have four other children and they are neglecting the other children due to the amount of time they spend caring for Maria. They feel if they had trained aides that could care for people with Traumatic Brain Injuries that they would be able to let someone else care for Maria and this would give them time to spend with the rest of their children and get some rest.

Mr. and Mrs. Tetto expressed the opinion that the Division of Developmental Disabilities is discriminating against age because the Division allows children of people over 55 years old to be admitted to the Urgent Residential Waiting List and will not allow Maria, because they are under 55 years old.

Mr. and Mrs. Tetto's position can be summarized as follows:

Mr. and Mrs. Tetto want Maria to be on the Residential Urgent Waiting List because she has a Traumatic Brain Injury. They state that her recovery will be more extensive if she receives an intensified therapeutic program now, rather than later. They want to provide this program with Self-determination funding. They want aides that are trained in working with people with traumatic brain injuries to care for Maria, so that Maria's therapies will be reinforced. Mr. and Mrs. Tetto stated that the level of care that they provide Maria leaves them exhausted, depressed and in physical pain. They say that their other four children are being neglected because they have no time for them due to the time needed for Maria's care. Mr. and Mrs. Tetto state that the Division of Developmental Disabilities is discriminating against them because they are under 55 years old.

Wendy Zoccola, Mary Giorlando and Darlene Yannetta presented the Division's position. They said that Maria does not meet the criteria for placement on the urgent waiting list. Her parents are under 55 years old, there is no risk of abuse, neglect or exploitation, and Maria's physical care and medical needs can be met with specialized support arranged and provided by the Division.

The Division has arranged for Maria to receive Medicaid through the Children's Medicaid Waiver. They said that the Adaptive Device Program was explained and offered to Mr. and Mrs. Tetto and that Maria currently does not need any adaptive devices. The case manager has been helping Mr. and Mrs. Tetto look for a Home Health Aide.

The Division's position can be summarized as follows:

The Division of Developmental Disabilities is attempting to provide specialized supports for Maria. They have arranged for Maria to receive Medicaid under the Children's Waiver, they have offered assistance with adaptive devices and are attempting to place an aide in Maria's home to assist her with activities of daily living. Maria's parents are under the age of 55 there is no risk of abuse neglect or exploitation, and Maria's physical care and medical needs are being met.

Mr. and Mrs. Tetto contend that their daughter Maria should be placed on the Residential Urgent Waiting list because her need for specialized therapies and specially trained aides to help in her rehabilitation is immediate. They would use Self-determination funding to provide for the therapies. They have stated that Maria's need for constant care is draining ·them both physically and mentally. Mr. and Mrs. Tetto contend that the Division of Developmental Disabilities is discriminating against because of their age. For the above stated reasons Mr. and Mrs. Tetto are appealing Maria's placement on the Non-Urgent Residential waiting list.

To grant Mr. and Mrs. Tetto's appeal would be arbitrary and contrary to Administrative Code, N.J.A.C.10:46C-1.4 (the Administrative Code that addresses Waiting List Assignment) that states "The urgent Category will be assigned when the individual is in need of placement because he or she is determined to be at significant risk". The code establishes criteria that create a presumption of when an individual is at significant risk. (Please refer to N.J.A.C. 10:46(3-1.4, iii for the criteria.) None of the criteria applies to Maria. Both of Maria's parents are under 55 years old. There is no reported risk of abuse, neglect or exploitation. Although both parents express some physical and mental stress, from taking care of Maria, they are able to care for her. In fact Maria's level of care, as described by Mr. and Mrs. Tetto, seems to be very good. She is currently receiving physical, speech and occupational therapy. Maria's parents are taking care of her medical needs. Maria does not seem to be at significant risk as defined by N.J.AC 10:46(3-1.4. The Division acted appropriately in assigning Maria to the Non Urgent Residential Waiting List.

Mr. and Mrs. Tetto's request for Maria to be assigned to the Urgent Residential Waiting list is denied. Maria Tetto will remain on the Non Urgent waiting list until the time she meets the Urgent Residential Waiting List Criteria.