Who can help me navigate the human service systems that my child needs? Who will help me understand my rights as the parent of a child with a disability both in school and in the community? Is there someone who can attend a meeting with me? I think my child needs more help, but I don’t feel like anyone is listening, is there someone who can help me?
Parents very often feel they are in this arena of disability and service system use all alone. There is so much to learn about rights, responsibilities, and service qualifications. It can be and frequently is completely overwhelming. My recommendation would be to find a person who listens and understands, and can support you through some of these struggles. That person or persons do not have to be working as an advocate, they can even be a good friend or family member.
Always On Our Own, Inc. 2700 West 21st Street
Erie, PA 16506
Phone: 814-836-9924
Always On Our Own is a non-profit agency made up of two separate projects. The first is a self-advocacy group for consumers 18 and older, with a primary diagnosis of a developmental disability, and receive at least one service from an Erie County MR provider. The self-advocacy group meets several times a year to allow for consumers to be supported among their peers, learn from experience, be informed of issues that affect them and learn the basic principles of advocating for one's rights and needs. It is a consumer run group that is very diverse in age, interests and lifestyles. The group meetings focus on topics for discussion and exercises that help lead to informed decision making and community inclusion. It is offered free of charge. This group also socializes, plans entertainment events, and sometimes has guest speakers that support their needs.
IM4Q (Independent Monitoring For Quality) serves Erie County Consumers who have a developmental disability and are randomly selected for participation in an annual survey. Always On Our Own facilitates the IM4Q project through interviews to consumers who meet specific criteria, allowing the opportunity to share their satisfaction of services and to allow for concerns and considerations to be addressed through county providers. The information collected is entered into the HCSIS system so that the state and county are aware of funding streams and needs assessments.
Adults with primary diagnosis of MR who are 18 and older can access these services by visiting the office or by phone. It is a free service and has an open door policy. Those wishing to become members of the Self-Advocacy group can request to be put on the mailing list so they may be informed of upcoming events.
Johan Conkling is the Director of Always On Our Own, and can be contacted at 814-836-9924 or jconkling.onourown@roadrunner.com. “Understanding the needs of people we serve has been a catalyst for making positive system change, by listening, advocating and supporting Always On Our Own helps people to be heard, to protect their rights and to work with other agencies to ensure that needs are being addressed.”
The ARC of Erie County 1311 West 26th Street
Erie, PA 16508
Phone: 814-452-4865
Website: www.arcoferiecounty.org
The ARC of Erie County is an Advocacy and Resource Center. Christine Galvin provides information, referral and individual advocacy to families who have a child or adult family member living with a disability. Christine can attend an IEP meeting, assist with getting an evaluation or help a person through the OVR (Office of Vocational Rehabilitation) process. Christine is an excellent listener, and can be reached at the ARC office, located at 1311 West 26th Street. The ARC telephone number is 814-454-4865 and email is galvin_eriearc@hotmail.com
Community Resources for Independence 3410 West 12th Street
Erie, PA 16505
Phone: 814-838-7222
Website: www.crinet.org
Community Resources for Independence (CRI) will provide individual advocacy to families who have a child with a disability. They will attend IEP meetings and other service provider meetings. CRI can assist families with understanding their rights as it pertains to disability issues. CRI offers many other services to people who have a disability as well as the advocacy mentioned here. CRI can be contacted by phone at 814-838-7222 or 1-800-530-5541.
Erie County Care Management 1601 Sassafras Street
Erie, PA 16501
Phone: 814-528-0600
Erie County Care Management has two people working to provide advocacy and parent support to individuals and/or families living with disabilities.
Brian McLaughlin is and has served as Advocate at Erie County’s Mental Health Base Service Unit for fifteen years. “I consider it a privilege to be an Advocate for persons with mental illness and their families. I feel a connection with consumers and families, as I come from a family affected by serious mental illness across the generations. This work helps make sense of my life. It grants me a strong sense of purpose. Within my work I come in contact with a broad spectrum of individuals and issues. I am often approached with questions and concerns about accessing and maximizing the benefit of mental health services available in Erie County. However, many of my contacts involve inquiries about issues ancillary to mental health or the mental health system. Sometimes I find myself lacking answers and immediate solutions. However, my background and longevity often enable me to know where to look or who to ask regarding most issues." Consultation is free. Folks can reach Brian at Erie County Care Management (814) 528-0600
Linda Rainey assists families in understanding and navigating the child welfare, mental health, juvenile justice and education systems. Linda works to inform families about their rights and responsibilities and teaches them how these can be exercised. She is available to assist by increasing knowledge of their children’s needs and choices offered by all service providers. Linda is adept at explaining policies, procedures and regulations that impact a family’s children and thereby empower them to become advocates for their own families. Linda is available to meet with families to assist in preparing for meetings, and help with understanding and completing forms. Linda can make home visits and accompany families to court hearings. Linda participates in systemic advocacy concerning Children’s mental health issues, and passes information along to families to keep them informed about changes and new initiatives.
Mental Health Association of Northwestern PA 1601 Peach Street
Erie, PA 16501
Phone: 814-452-4462
Website: www.mhanp.org
At the Mental Health Association of Northwestern PA, Jodi Wilson is the child and family advocate. Jodi covers Forest and Warren Counties predominantly but she will crossover into Erie County for families located in the Corry area. Jodi can attend meetings (IEP or other), make referrals for independent evaluations, give phone support and forward pertinent information via email to a parent listserv. Jodi also offers a support group for parents during the school year, and will research information about specific disabilities and provide that information on an individual basis. You can access services by calling Jodi at 814-726-8406 or emailing her at wilsonj@wc-hs.org. There is no cost for her services and the only eligibility requirement is that you need help and support with your child to access services they need. “I am a parent of a 23 year old with multiple disabilities and an 18 year old with a specific learning disability and behavioral health issues. I do this work because I don’t think that a parent should go through what I did to get the services their child needs and is entitled to by law.”
Jodi is also the recently elected chairperson of the Local Right to Education Task Force. Any parent who’s child receives special education services in the Tri County area is eligible to become a member of this task force and to receive support and assistance from it’s officers.
Mission Empower 1932 B West 8th Street
Erie, PA 16505
Phone: 814-825-0788
Website: www.missionempower.org
Jill Hrinda-Patten, is the founder and Executive Director of Mission Empower. At Mission Empower, they are passionate about assisting the current and next generation of youth with disabilities to use their gifts and talents to follow their dreams. They accomplish their mission by empowering, advocating and educating families, youth and the community to promote inclusion and full participation in the community for all.
As a person with significant disabilities, Jill has experienced first hand the struggles of discrimination and the lack of understanding within the public education system, the world of employment and motherhood. When her career started over thirteen years ago, she saw that youth with disabilities were still experiencing similar struggles that she experienced growing up. Jill made working with youth her mission and began attending any and all trainings available on inclusion, education law and advocacy.
In 2007, advocates and parents with children with disabilities came together to form Mission Empower, a grass roots nonprofit exclusively focused on inclusion for youth with disabilities. Mission Empower works with and alongside families who have children from birth to twenty eight years of age with all types of disabilities, and provides community education with their “Stereotype Busters” program that uses humorous skits to dispel societal myths concerning people with disabilities.
Mission Empower, an organization currently staffed by volunteers, accepts anyone with a need for advocacy or that wants to learn more about the system. You may contact Mission Empower via the web at www.missionempower.org or by phone at 814-825-0788. “Together, we can advocate for all to use their gifts and talents as they follow their dreams.”
NAMI of Erie County 1611 Peach Street, Suite 105
Erie, PA 16501
Phone: 814-456-1773
Website: www.NAMIErie.org
A groups of parents formed NAMI, (pronounced "nom-ee"), or the National Alliance on Mental Illness, during the 1970's. Often, parents who have children with mental illness find themselves battling barriers such as stigma, confusion over medical advice, and a lack of support for the family unit. NAMI of Erie County, founded in 1979, attempts to ease that struggle for parents who battle mental illness on behalf of their children through education, advocacy and support. The agency offers referrals, educational programming such as the Family-To-Family curriculum, and several foryms called Speaker Series, which highlights various mental health topics ranging from bipolar disorder to schizophrenia.
All programs at NAMI are offered FREE of cost to the community. The cornerstone of the agency is the unique Family-To-Family program, which is Erie County's only family educational curriculum for family members who have a loved one facing the challenge of mental illness. This 12-week course combines the latest medical research, education about acting and reacting to children with mental illness, and coping skills in an environment that encourages parents to network with other families in similar situations. The majority of participants are parents whose children are coping from one of the major mental illnesses: bipolar disorder, schizophrenia, obsessive compulsive disorder and Aspergers syndrome. By the end of the course, there is an unbreakable bond between the families participating in the program.
Ways to Get Involved with NAMI of Erie County:
- Visit NAMEErie.org for a complete schedule of events, and to sign up for their e-newsletter
- "Become a Fan" of the agency on Facebook and Twitter
- Register for the fall session of the Family-To-Family course at NAMEErie.org
- Enjoy NAMI's Lending Library, which features more than 500 books focused on various mental health topics suitable for consumers, family members and mental health professionals
For more information, contact Denise Kolivoski, Executive Director, at 814-456-1773
The Parent Support Center is staffed by Michele Kulesza, the parent of a child with a disability. Michele has been through mane of the same concerns other parents of children with disabilities have been through. The parent consultant is a 'listening ear' to parents, a facilitator between parents and educators, and a source of information for parents of children with disabilities in Erie, Crawford and Warren Counties. Parent training and education is very important in empowering parents with correct and accurate information regarding special education. Periodic workshops and seminars along with individual support are available for parents. The Parent Support Center is a resource of information on various disabilities and special education laws and procedures.
For more information on the Parent Support Center, visit www.iu5.org/sites/ParentSupport/default.aspx, or contact Michele Kulesza at 814-836-0870, ext. 5258, or toll free at 1-800-677-5601, ext. 5258 (toll free only within 814 area code). Michele can also be reached via email at michele_kulesza@iu5.org.
UCP/Class
UCP/CLASS, which stands for United Cerebral Palsy/Community Living and Support Services, is a nonprofit organization that offers different services to individuals of varying abilities. One such program, the Community Services Program for Persons with Physical Disabilities, more commonly known as CSPPPD, enables adults with physical disabilities to live as independently as possible. Katherine Reim is the CSPPPD Program Manager for the UCP/CLASS Erie Regional Office, and works with Nancy Murphy to provide Service Coordination to participants who have physical disabilities and are enrolled in any of the CSPPPD waivers. These waivers include Independence, OBRA and the Community Care Waiver.
Services available through the CSPPPD Program are:
- Coordination of Environmental Modifications
- Misc. Durable Medical Treatment
- Non-medical Transportation
- PERS (Life call system)
- Respite
- Educational Services
- Skills Training
- Community Integration
- Peer Counseling
- Night Supervision
- Adult Day
- Supported Employment
- Pre-vocational Services
- Community Transition Services
Additional services may include Nursing Services, Coaching/Cueing, Cognitive Therapy, Physical Therapy, Occupational Therapy, Speech Therapy, and/or Behavioral Therapy. These services are available to individuals only after they are denied by their insurance companies. The supports coordinator can offer assistnce with these services based on the consumers individual circumstances.
UPC/CLASS also serves as an outreach for the Pennsylvania Assistive Technology Program, or PATF, a low interest loan program available statewide to help people with disabilities purchase the assistive technology items or services to help them remain independent. For example, PARF has extended loans to be used for wheelchair accessible vans and lifts, home modifications, stair glides, hearing aids, and computers with specialized hardware or software. Fore more information, visit www.patf.us.
In addition, UPC/CLASS offers Regional Housing Coordination, a program that provides coordination, education outreach, technical assistance and training to conduct presentations to groups and organizations about housing needs and resources available to people with disabilities. The Regional Housing Coordinator is Jodi Schersten, and topics may include:
- Accessible Affordable Housing
- Home Modifications
- Local Housing Option Team (LHOT)
- PA Apartment Locater (PAL)
- Subsidized/affordable housing systems
For more information, contact Katherine Reim at 1-888-954-2424, ext. 2117, or visit www.upcclass.org.
All the information in this article was provided by the individual agency. There are many services available in Erie County that offer support to families and individuals. If you know an agency that offers similar services to those listed below, please send a detailed email to advocate@eriesprout.com.
Kathy Lutz, in addition to contributing advocacy information to Erie Sprout, is a volunteer advocate for Mission Empower, and can be reached through that agency for additional advocacy information.
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