and in despair and against our will comes wisdom." She said she would like to share a little bit of wisdom that has come against her will. She said the effect to people from the Medicaid change is catastrophic. It is not their fault the
rule is changed but their lives are turned upside down. She said this is not just another social program but humanitarian aid.

Lori Cerrar, Executive Director, Allies with Families, stated her organization works with families who have children with mental illness. She displayed a visual aid of cutouts of children with hearts representing the number of children in unfunded categories in the different counties who have been turned away at the door because of the Medicaid restriction. She said the total number she is reporting is 2,989 children who are at risk or have already lost the opportunity to get treatment at an early age. She indicated that some families give up custody of their children so that their children can receive mental health services through DCFS. Families should not have to be ripped apart that way. Children should be in their own homes, in their own schools and getting the treatment that they need to be productive members of society.

Lori McGinnis said she is 20 years old and the youth coordinator for Allies for Families and has also been a consumer of mental health services since she was 12. She said she wanted to testify of the importance of early identification and intervention treatments. She said without those treatments she would not have been able to be here today. She said if youth are not treated early they will turn up somewhere later in the streets, in the morgues or in the juvenile justice system where a lot of young people are receiving services.

Eric Mathes distributed a prepared letter to the committee. He indicated he has Down Syndrome. He is a member of People First and the Governor's Council for People with Disabilities. He said he was on a waiting list for services to help him with a job coach so he can get a job. He said he is currently unemployed. He said he is also on a waiting list for housing. He said his dream is to live on his own and have a job where he can pay his bills on time like other people.

Kelly Holt stated she was also a member of People First and on the Governor's Council for People with Disabilities, but she was here speaking as an individual person. She said she has been on the waiting list for services since April 2001. She has a job demonstrating products at different stores in Price but it is not enough to pay all her bills. She would like to have training so she could work in an office or in a day care. She is also on the waiting list for housing and would like to learn to cook and budget her own money.

Dianna Elliott said she sees a common denominator here in the meeting and it is the waiting list. She said she asks herself what is the top priority of the state government. Is it people or education or jobs? She indicated she is living at the Road Home shelter and even the shelter has a waiting list. She says maybe many of these homeless people are the ones who need mental health benefits. She said maybe there should be an investigation as to why there are so many on the waiting lists and what is preventing these people from getting the help they need.

Tracy Johnson said she was here to talk about the New Frontier for Families project that has been going for six years. She indicated there is a great need to continue this program, especially mental health services for children. She said the New Frontier for Families, Future Links, and Allies for Families have worked together on the project. She indicated a report from the research component had been distributed to Legislator's mail boxes.

Brenda Shaffer shared her experience as a parent of a daughter who has been diagnosed with bipolar disorder. She said her daughter is now 18 years old and scheduled to graduate from high school this spring. She said even though her illness is chronic and there are extreme highs and lows, she is quite stable now, but that was not always the case.
She said until she was 14, the whole family was in turmoil. She said that without the help of the advocate from New Frontiers for Families, the outcome would have been a very bleak future. She said it was her hope that there would be an understanding of the need and value of family advocates and that funding would be continued.

Lisa Nichols, Executive Director, Mid-Town Community Health Center in Ogden, stated she was here representing Mid-Town as well as the community health centers throughout the state. She said she wanted to describe the crisis

that has occurred in community health centers relative to the discharge of patients with mental health issues from county facilities. She said her clinic is a primary care facility and the mission is to provide health care to people with no access because of insurance, language barriers, or financial issues. The clinics are not mental health specialists but have somewhat been forced to serve mental health patients since June.

Joyce Dolcourt stated she is the Chair of the Legislative Coalition for People with Disabilities. She indicated their priorities were on the fact sheet that was distributed. She said they were advocating for increased funding for the DSPD waiting list, health community providers systems and quality care at the Utah State Developmental Center. She asked committee members to read the handout for more detailed information. She said she wanted to share her time with two families who had come to testify.

Carrie Roth stated she is a single mother and introduced her son Jacob. She indicated she met Jacob when he was 12 days old and even though she was told he had Spina Bifida, she loved him and it didn't matter. She said Jacob has since had over 40 surgeries with more pending. She said she now has numerous health problems of her own and she needs help. Ten years ago, Jacob was qualified and approved for services through DSPD and five years ago she received a one time grant for respite services. She said she has kept in touch with the case worker but each time she is told there is still no funding available. She said she hoped funding could be increased for people with special needs and their families. A letter from Jacob was distributed.

Sheila Wall introduced her son Rodney and said they have been on the DSPD waiting list for eight years. During Rodney's school program he was able to work at McDonalds, All A Dollar and Dan's Foods. Since school ended, he is now home full time and is now having to be medicated for anxiety and all the work effort from the school is falling away. She said after 8 years, she is wondering when will they be helped. She said her family and others need help desperately.

Rachel Loertscher stated she has a 4 year old autistic son who had been going to the Autism pre-school in the Granite School District which contracted with the Carman Pinegree School . She said thank you so very much for the funding. She described the change in her son and the joy of having him be able to communicate his needs to her. She stated that autistic children do not learn as normal children do. They have to learn by rote and repetition. This takes intense early intervention before the brain sets and it is too late.

Karen Sterling stated she is the mother of a teenage daughter with multiple physical and mental problems. She said she regularly sees seven specialist physicians and takes thirteen medications a day. She said her mental condition severely limited the care available to her. She indicated that the day care covered by her IHC insurance was Wasatch Canyons and they refused to take her because of her medications. She said she has appealed with her insurance to try to get services elsewhere. DSPD is the only place that has the resources to help her. She said they have been on the waiting list for over three years and like so many are patiently waiting for services. She urged continued funding.

Heidi Harmon, a parent from Heber City, distributed a letter to the committee members and thanked them for their public service. She said what she had to say was close to her heart and difficult to speak about. She indicated her son Eric is 13 and has severe Autism. She said it has been a draining, emotionally challenging 11 years to deal with his demanding needs. She described Eric's behavior and limitations. She indicated that at times he has to be physically restrained because he becomes uncontrollable. She said each day they ask themselves how can we find the strength to deal with this today. She said her friend once said to her, "Your family never gets a chance to feel normal." She said they love their son and don't want him in an institution. She indicated they need respite services and all they are asking for is a chance to occasionally feel normal.

Phil Shumway, Executive Director, Utah Association of Community Services Providers, said he represents the providers contracted by DSPD to support more than 4,000 people in Utah. There are 46 small businesses which rely on Legislative appropriations to provide these services. He indicated these services are based on individual needs and can range from just a few hours per week to 24 hours a day in a residential setting. They also help people who are trying to keep their children at home. He said they are requesting a COLA this year to equal the COLA of public

employees. He thanked those who attended their open house and distributed a newsletter.

Pete Singledecker, Utah Association of Service Providers, said there was no better way to demonstrate the need for increased funding for providers than to give a story of one of their direct care staff, which is detailed in the handout. He said this staff member is just like thousands of other staff members. He said if no action is taken, this employee's bi-weekly take home pay will drop to $470, but if the committee fully funds the requested COLA, the take home pay would be $529.

Amy Moore distributed a letter to committee members. She said she is a parent of a 9 year old daughter with Down Syndrome. She expressed her heart felt thanks for funding the DSPD services. She said before her daughter was funded, their family spent years trying to meet the needs on their own which took a toll on their financial and emotional well being. She said that receiving the funding, including the medicaid waiver and respite care, and knowing she was not alone, has saved their family.

Heidi Hamilton, secretary, NAMI, said she was here to ask that the funding for Medicaid and funding to help alleviate the mental health crisis we are facing today be reinstated. She indicated she has witnessed some of the effects of the Medicaid cuts. She said with Wasatch Mental Health having to turn away clients, LDS Family Services and other agencies have taken the brunt of assisting those individuals but they do not have the capacity to do crisis care or to serve those with chronic mental illness.

Dawn NiSol stated that she had a childhood that few children survive followed by an abusive marriage. She said her life is painful and hard as she struggles with major depression, post traumatic stress disorder, and other learning and physical disabilities. She indicated that Wasatch Mental Health has been her lifeline and because of Wasatch, she has not only survived but had the opportunity to help others who struggle. She said that last summer, along with many others, she lost her medication, her therapist, the opportunity to service others and the feeling of being safe and valued. She indicated she has lost her lifeline.

Cathy Searle, Director, Adoption Exchange, said she was here to speak on behalf of her family and for her friends who adopted children through the foster care system. She indicated she and her husband have nine children, three born to them and six who joined the family through adoption. She indicated five of these children have special needs. She said she was grateful for the support to her family and other families throughout the state from DCFS. She said our community has set standards for safety for children and when parents are unable or unwilling to care for their children, it has been determined that it is best for these children to be placed with other families. She said adoptive families step forward because they believe that all children deserve to grow up in a family where they are safe and cherished and can grow to their potential.

Kathy Hawkins thanked the committee for being there and allowing this public testimony. She told the story of three children and their challenges leading up to adoption. She said these are the state's children. It is a partnership between the state and those families who are willing to adopt these special needs children. She said every time you allocate a dollar, you have done what America and the state of Utah needs to do.

Barbara Feaster stated she is a child abuse survivor and a former child client of DCFS and president of Youth Foster Success, which is a nonprofit organization created and run by former foster care children. She said they are working to improve the lives of children in foster care. She said that children in foster care are really important and asked that funding be made to invest in these children. She said to please make sure that funding is kept up with caseloads so that children are taken care of by their case workers. She said foster children are full of potential and can give back to society if they have a safe place to live and thrive.

Karen Greenwell displayed a picture of her family. She said she is the mother of three children, two of which have been diagnosed with bipolar disorder. She indicated that children do get mental illness. She read a statement from her children. In his letter, Taylor stated he is nine years old and has received a lot of help and his life is a lot better because of his doctor and his therapists. He said he has learned a lot about bipolar and how to control himself.

Sarah, who is 13 years old, wrote that sometimes her life is complicated and sometimes it is good but she doesn't always feel that way. She said she receives help from her parents, her doctors and her therapists. Ms. Greenwell indicated that mental health treatments are available and treatments are effective. However, access to treatment is limited and expensive and many are uninsurable.

Co-Chair Killpack stated appreciation for those who took the time to come and testify. Rep. McGee complimented the co-chairs and the staff for successfully organizing the meeting to allow so many to testify. Sen. Davis encouraged committee members if they have questions on these importance matters to ask those who are involved up front in these programs.

MOTION: Rep. Ray moved to adjourn. The motion passed unanimously with Sen. Buttars absent at the time of the vote.

Co-Chair Killpack adjourned the meeting at 4:20 p.m.

Minutes reported by Norda Shepard, Secretary.