NINA BAKER – PTI NEBRASKA, 402-403-3908 SUSAN WILLIAMS – PTI NEBRASKA, 402-403-3917

1. What PTI Nebraska Can Do For You and the Families You Serve NINA BAKER – PTI NEBRASKA,402-403-3908SUSAN WILLIAMS – PTI NEBRASKA,402-403-3917 PTI Nebraska 2564 Leavenworth St, Suite 202 Omaha, NE 68106 800-284-8520

2. What is PTI Nebraska? A statewide resource for families of children with disabilities or special healthcare needs, enabling parents to have the capacity to improve the education and healthcare outcomes for their children.

3. Parent Training and Information for Families of Children with Disabilities • Non profit organization funded by both the Federal and State Departments of Education. • There is at least one parent center in each state and Nebraska’s is located in Omaha. • PTI serves the whole State of Nebraska. • It provides training, information and support to parents who have a child or children that receives special education services.

4. Every State has at least one Parent Training and Information Center (PTI) to offer families just this kind of information. Many States also have a Community Parent Resource Center (CPRC), which offers the same type of support and training to parents of children with disabilities. • http://www.parentcenterhub.org/find-your-center/

5. Family to FamilyHealth InformationCenter PTI Nebraska is the home of Nebraska’s Family to Family Health Information Center Funding for the center was received from the U.S. Department of Health and Human Services, Health Resources and Services Administration (HRSA), Maternal and Child Health Bureau (MCHB), Division of Services for Children with Special Health Needs and developed to serve families in Nebraska.

6. There is no charge for any service provided by PTI Nebraska • Conversations are kept confidential • PTI serves families of children with special needs age birth through twenty six • PTI Nebraska is the home for the Family to Family Health Information Center in Nebraska NOT EVEN

7. The Staff at PTI Nebraska are parent/professionals who are available to talk to parents and professionals by phone, e-mail or in person about special education, other services, and disability specific information

8. Why Parent Training and Information Centers? • To help families get information about services for their children with disabilities • To provide one on one support to parents. • To help families with decisions that make a difference in the lives of children with disabilities. • To connect children with disabilities to community resources that address their needs. • Because every year many mothers become mothers of children with disabilities.

9. Parents need lots of information Parents • What’s out there when my child is no longer in school? • Who is there to talk with about my child’s adult needs? • How will my child’s needs be carried on? • Where do we go from here?

10. College Success for Students with Disabilities A growing number of students with disabilities are attending colleges and universities across the nation. More and more teenagers, along with their parents and high school counselors , are searching for programs that will be appropriate for their needs.

11. HIGH SCHOOL VS COLLEGE

12. By giving parents the tools to be a better team member for their child They will not fear to ask questions.

13. Will I have to do this alone? NO! Many families don’t know that there may still be a TEAM for their child. It looks different and won’t include Public Education.

14. Who is There? Each team will look different and be comprised of different people or agencies. PTI helps families with this process.

15. Contact us or visit the office if: • You would like information about your child’s disability • You have a question about your child’s program. • Workshops are available for families growing into the adult services world • Workshops can be offered in your community or on the internet • Contact PTI Nebraska to get more information.

16. What is Advocacy? The act of supporting a cause or proposal; pleading the cause of another. • Merriam Webster Collegiate Dictionary, 10th Edition, 1999

17. PTI Nebraska offers workshops for families with children of all ages, caregivers, students, educators, administrators and health professionals about education, health and community services.

18. The Advocate The advocate can serve in these ways: Supports, helps, assists, and aids Speaks and pleads on behalf of others Defends and argues for people or causes

19. Parents are Natural Advocates • First teachers for our child • Child’s role model • Responsible for our child • Have our child’s best interest at heart • Know our child better than anyone • Have the right to make decisions for our child

20. SSI • Supplementary Security Income • Is a Federal program funded by general tax revenues (not Social Security taxes) • Helps aged, blind, and disabled people, who have little or no income • Provides cash to meet basic needs for food, clothing, and shelter. • In Nebraska, with SSI eligibility the person is eligible for NE Medicaid • www.socialsecurity.gov/disabilityssi/ssi.html

21. Two Different Applications • SSI for a Child with a disability • Resources of family are considered • Address needs of the child in the family • SSI for an Adult with a disability • At age 18 - application is for an adult with a disability • Based on the person’s income • There are different criteria based on age.

22. How to apply for SSI benefits • Call SSI at 1-800-772-1213 • to make an appointment. • Go to: www.socialsecurity.gov/disabilityssi/ssi.html • Follow directions to start the process • Someone else may call and make the appointment for you and attend the interview with you • Visit the SSI office to apply without making an appointment. You may have to wait awhile. • Do the application over the phone with an appointment

23. Apply as soon as possible • The date of your call to make an appointment is your application filing date. • Keep this appointment • Reschedule if necessary • They will use the date of your original contact as your SSI application date.

24. With SSI, You Have The Right: • To apply • To receive help from Social Security • To a Representative • To examine your file • To appeal

25. APPEAL, APPEAL, APPEAL Every decision process can be appealed Every public or private agency has an appeal process ASK • What is the appeal process? • What are the time lines for appeal? • Ask the doctor or other professional to assist with the appeal • Always appeal.

26. SSI Appeal • A procedure for those who disagree with the decision(s). • The levels of appeal are: • Reconsideration • Administrative Law Judge Hearing • Appeals Council Reviewing • Federal Court Appeal

27. Nebraska Medicaid is funded jointly by the State and federal government Provides health care services to eligible elderly, disabled individuals and low-income pregnant women, children and parents Medicaid

28. Medical Coverage Options in Transition • Medicaid • Eligible with SSI eligiblity – need apply through ACCESS Nebraska • Medicaid Waiver – as an adult • Review occurs between child and adult • Different eligibility criteria for adult • Stay on Family private insurance until 26. • Purchase as an individual on the MarketPlace. • www.healthcare.gov

29. Forms of Substituted Judgment • Power of Attorney(Uniform Power of Attorney Act, Neb. Rev. Stat. §§30-4001 – 30-4045) • Representative Payee (Title XVI, Social Security Act) • Conservatorship (Conservatorship & Guardianship, Neb. Rev. Stat. §30-2601 – 30-2661) • Guardianship

30. Guardianship Court appointed; terminated Periodic reporting requirements Decision making about the person (may also make decisions about the person’s money and property if also a Conservator)

31. Guardianship Guardianship should be used sparingly, precisely because Guardians have so much power. (NebGuide) Limited guardianship Full guardianship (most restrictive of all substituted decision making)

32. Considerations… If a parent becomes a guardian or assists in decision-making for an adult son or daughter, the role changes. Any person who chooses to become a guardian should consider the time required and their own willingness to serve in this role The person is the Guardian’s primary responsibility The person must be included in decision making to the fullest extent possible Guardians must consider the balance between a desire to protect the person and the recognition that there must be risk to have a full, satisfying life The guardian works to ensure that placement is in the least restrictive alternative

33. The need for a Guardian should be reassessed regularly As people have learned how to make informed decisions the may have: Overcome the need for a guardian The opportunity to change the guardianship from full to limited The guardian has a duty to return to the court to legally reduce or remove the guardianship if it is no longer necessary!

34. PTI Nebraska offers Information & Support for: • Guardianship • Adult services • SSI application • Medicaid application • Appeals when services are denied • Funding options when no one else will pay • Health insurance information and application

35. PTI Nebraska offers Information & Support for: • Agencies providing adult services • Housing options • Higher Education options • Economic Assistance programs available • Linkages with other state programs (if moving) • National Organizations • Other information as requested

36. PROVIDERS DIRECTORY • http://dhhs.ne.gov/developmental_disabilities/Documents/ProviderProfile.pdf

37. Family to Family Health Information Center offers: • Information about: • Health conditions and disabilities • Preparation for transition from high school • Adult Health services & resources • Adult Health professionals for young adults who can’t see pediatricians anymore • Medical and financial resources necessary to achieve improved health outcomes

38. Our English/Spanish web-site:www.pti-nebraska.org • Current information on local and national conferences and events. • Recreational Opportunities for children and youth with disabilities. • Instant access to other sites that will provide relevant and helpful information regarding their child who has a disability. • Information on services and supports that are available to parents, locally, statewide, and nationally.

39. Questions?

40. For Families, You Make the Difference