Your young adult wants to get married and have kids …..now what? - PowerPoint Presentation

Your young adult wants to get married and have kids …..now what? Major funding for the Supporting Parents with Disabilities Project provided by the Oklahoma Developmental Disabilities Council

Did you see this coming? Question:What is the natural outcome of successful advocacy during the education years? Answer Your child or student will have the same or similar dreams and goals as other young men and women their age .

Learning objectives for today Understand the challenges your child or student will face as a parent with a disability in Oklahoma. 2. Understand the type of issues that can lead to intervention by the Child Welfare or court system.3. Leave with practical ideas and resources that are available to help your child succeed if they wish to be a parent.

How many Oklahomans with disabilities are current parents Total: 96,800** Some parents fall into more than one category.2/3rd are married or living with their spouse or partner Only 13,100 are receiving SSI 1/3 live below federal poverty level; another 1/3 live 100-199% FPL Source: Kaye, H. Steven. Current Demographics of Parents with Disabilities in the U.S. Berkeley, CA: Through the Looking Glass, 2012

Challenges facing parents with disabilities? For parents with developmental and intellectual disabilities: Parent training is not presented in formats that are appropriate for parents with intellectual disabilities.PwD often face discrimination in the legal system and their parental competence is assessed using measures that don’t accommodate their disability.Personal assistance services don’t cover help with parenting tasks.PwD face barriers maintaining transportation or using public transit systems. There is a lack of peer support for parents with disabilities (support groups, respite)

Challenges facing parents with disabilities For parents with sensory or physical disabilities:Poor access to alternative forms of communication Service centers that are difficult to navigate for persons with mobility issues Poor access to adaptive baby care equipment for parents with physical disabilities.  Poor access to knowledgeable support – advocates, mentors, peers, assessment experts etc.  Poor access to effective and affordable legal representation. Significant barriers when seeking reproductive healthcare , assisted reproductive technology or when seeking to adopt. If they conceive, often infants are removed at birth due to safety concerns. Source: National Council on Disability’s 2012 report, “Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and their Children”.

“These parents are the only distinct community of Americans who must struggle to retain custody of their children.” ~ National Council on Disabilities   Removal Rates for parents with disabilities: Psychiatric disability 78-80% Intellectual disability 40-80% Physical disability 13% The child welfare and court systems are ill-equipped to support parents with disabilities leading to high rates of child removal and loss of parental rights.

Most common concerns of Child Welfare Lack of knowledge about basic parenting tasks (feeding, diapering, safe sleep, transferring infant, care for sick child, general supervision) Make sure the parent education is accessible with opportunities to practiceMaintenance & cleanliness of home Check out community resources for low income families Missed doctor appointments or school days Most frequent obstacles – organization/memory or transportation Money management issues Identify natural support person or find accessible financial literacy Substance abuse or domestic violence Treatment needs to be accessible, consider 1 on 1 instead of group therapy

Navigating Child Welfare – Every parent has rights Source: U.S Department of Human Services and U.S. Department of Justice: “Protecting the Rights of Parents and Prospective Parents with Disabilities: Technical Assistance for State and Local Child Welfare Agencies and Courts under Title II of the Americans with Disabilities Act and Section 504 of the Rehabilitation Act” , August 2015 Available online at: https://www.ada.gov/doj_hhs_ta/child_welfare_ta.html The Parents with Disabilities Toolkit provides a summary of disability laws that protect families’ rights. Inside of the toolkit, you will find information on topics like adoption, custody, visitation, family law, and the child welfare system. We have also shared parts of NCD’s report, Rocking the Cradle, with stories from parents who have been treated unfairly because of their disabilities. Developed by the Christopher & Dana Reeve Foundation and the National Council of Disability (NCD). Available in plain language and traditional versions at https://ncd.gov/publications/2012/Sep272012 Hear first-hand stories from parents with disabilities (5 minute video) https://www.youtube.com/watch?v=EoWBoqLzxO0

What kind of help do parents want? (Infant)

What kind of help do parents want (School)

Practical Resources Help your child or student

Healthy Bodies – A parents guide on puberty for girls & boys with disabilities from Vanderbilt University (free) Puberty can be a stressful and confusing time for you and your child with an Intellectual and/or Developmental Disability (I/DD). In spite of delays in other areas, children with I/DD usually enter puberty around the same time as other children their age. Some children with I/DD, including children with spina bifida and cerebral palsy, may start puberty early (called precocious puberty). This toolkit gives you resources and tips on how to talk to your child about these sensitive topics. The toolkit web version is a pdf version of the printed toolkit that you can print for your reference.  Separate toolkits for boys and girls. The toolkit appendix has storyboards and visuals that you can use in implementing the methods outlined in the toolkit. This file is not included in the printed manual. You may choose to print the entire appendix, or you may want to print a particular page or set of pictures to laminate for everyday use. You may share these pictures with others who work with or care for your child. https://vkc.mc.vanderbilt.edu/healthybodies/index.html

Start with making friends – be intentional

Teach about healthy relationships

SAFE: Safety Awareness for Empowerment Developed by the Waisman Center - University of Wisconsin–Madison University Center for Excellence in Developmental Disabilities (free)For youth with special healthcare needsCovers first aid (a frequent child welfare concern)Teaches personal safety and healthy relationship skills to prevent victimization and exploitation https://www2.waisman.wisc.edu/cedd/pdfs/products/health/SAFE.pdf

Use Person Centered Planningand Life Course Tools – find out what they want Practical personalized solutions Long term natural support

Things that helped: (from our interviews)Family members willing to show them how to do things and double check safety issues. Adaptive equipment!Access to occupational therapistsHelp with organizing -- at home (baskets) or with appointmentsVisual aides – pictures are your friendHelp with planning – lay out ALL the steps, teach routines Information on where to find help and practical guidanceIn home services solve the transportation issue

Remember there are lots of ways to learn!Great info for providers you bring in Be a great model – don’t just do for them, talk through what you’re doing so they get the “why”Tell someone verbally (check for understanding) – provide the handout or written instructions for support person (ask who that is!)Use “easy read” material – Easy read parenting guides (also can send texts and helpful video links) Use visual steps for a task (to teach & then post as reminder) – bathing the baby Use visual reminders – reading baby/toddler cues

Healthy Start for Me and My Baby Healthy Start for Me and My Baby is an interactive educational resource designed for pregnant women with learning difficulties. This includes women with intellectual impairment, and women who experience learning difficulties due to lifelong social, educational and health disadvantage. Healthy Start for Me and My Baby is designed to complement current practice and promote the health and wellbeing of pregnant women with learning difficulties by providing accessible information about pregnancy and childbirth; promoting informed choice and participation in health care; and facilitating better communication with health professionals. (free) Parent & facilitator PDF copies available by contacting Lisa at lisa-simmons@ouhsc.edu

  Discover the range of interactive tools, video guides, mobile apps and other products Raising Children Network offers parents and carers .  Includes: Our video guide shows common baby cues to help you understand your baby’s body language. Watch some tricky parent and teen situations and explore how different approaches to communicating can get different results. Interactive tool to learn how to keep your home safe for kids of different ages. Explore key child development stages on video, with fun play ideas to boost your child’s learning from birth to eight years. http://raisingchildren.net.au/interactive_tools/interactive_tools_landing.html Parenting in Pictures Articles on lots of basic parenting skills and situations with both words and pictures. Covers all ages. http://raisingchildren.net.au/parenting_in_pictures/pip_landing_page.html  

Checking for understandingUse either/or questions instead of yes/no questions. An example of this is “Did that make you feel happy or sad?” Include an option of answering “I don’t know” to questions and make sure the parent knows that it is ok to say thisKeep questions short and simpleUse some open-ended questions, e.g., “Tell me what you’ve been doing this week to practice the skills you’ve learnt in this program?”Avoid statement or questions that have too much detail or are too complex Ask factual questions that require immediate and concrete answersAsk the parent to explain a comment you have just made, or to tell you more about it, e.g., “Tell me what it may feel like when labor starts”Ask for examples to illustrate a comment Ask how the parent is going to do the task Use visuals

Medical Encounter Board Medical encounters are fraught with communication pitfalls, and, for patients who have limited ability to speak or have a pre-existing condition limiting their communication capabilities, these pitfalls can be multiplied many times. Such patients need to have communication supports at the ready if and when they are not provided with adequate supports during medical encounters. This is an easy-to-use and readily available resource for patients with communication vulnerabilities facing medical interactions and covers some of the  most important phrases that patients wish to convey during medical visits, in emergency rooms, and in related health settings.  (LINK) https://widgit-health.com/download-files/medical-encounter-board/MEB-grid-A4.pdf

Video Milestones Click on an age above to see photo and video examples of important developmental milestones. Use this library as an aid in completing the milestones checklist for your child’s age. To see these photos and videos with milestones checklists, go to www.cdc.gov/Milestones(http://www.cdc.gov/ncbddd/actearly/milestones/index.html) Needs adaptation Ideas? Search by child’s age, parent’s disability or task that the parent is struggling with: http://disabledparent.org.uk/find-information Supporting parents with learning disabilities: The good practice guide. This guide pairs simple statements with supporting pictures – an example of how to make materials easier for parents with LD to understand. http://www.changepeople.org/Change/media/Change-Media-Library/Project%20Media/CHANGE_good_practice_guidance_2006.pdf The organization above has also created several books in “easy read” – they teach parenting skills and life skills in a style that was developed with input from parents with LD to ensure the information was accessible. http://www.changepeople.org/shop/products

Well-illustrated guidebooks are designed to help parents with limited literacy skills foster their children’s self-esteem and language development. Accompanying DVD to use with parents. Available in English or Spanish ($24.95) This resource offers thousands of activities and training techniques for directly involving parents who are blind, deaf, have physical or learning disabilities, or have cognitive delays with children birth-2 years. Helpful for meeting IEP/IFSP requirements.

TransportationThe Dan Lutz Rehabilitative Driving Services, L.L.C., is now a privately owned driving program housed on the campus of the University of Central Oklahoma (UCO) in Edmond, Oklahoma. The program offers driver training, assessment, and evaluation services for individuals with disabilities. Ph: 405-834-3877Parents with Disabilities: Using Public Transportation with Your Child.https://www.facebook.com/lookingglass.org/videos/10153735663691656/ Embark Plus – OKC door to door transportation (must apply) for those with documented physical or cognitive disabilityhttps://embarkok.com/learn/services/plus

Managing money Budgeting for Students with Autism and Learning Differences (Plus Helpful Tips for Parents)http://info.cipworldwide.org/blog/budgeting-for-young-students-with-autism-and-learning-differences?utm_campaign=Full+Year+Program+Enrollment+2017-2018&utm_source=hs_email&utm_medium=email&utm_content=54669928&_hsenc=p2ANqtz-9KlaZytW8NGtE9cLbW6JF7BWXNocuoxrl3h4GR7mAHIOE-edmtaylMXnKrMdL9TZvUxl57Proh_UeUULs-WZu758-OMg&_hsmi=54670453 Financial Literacy for students with disabilities https://www.eparent.com/features-3/financial-literacy-students-disabilities-necessary-life-skill-independent-living/  

Practical Resources Help for providers and family members

Women Be Healthy For training women with disabilities, Women Be Healthy is an 11-week, 22-hour educational curriculum for use by health educators and advocates. The curriculum teaches women with intellectual disabilities about breast and cervical cancer, recommended screenings, and techniques for coping with procedures and assertiveness in medical situations. The goal is to increase access to and receipt of recommended screenings. Women who participated showed significant improvements in health knowledge, behaviors, beliefs and coping strategies. The website also includes links to a series of YouTube videos developed for women with disabilities.   Audience : Health educators, disability advocates and women with disabilities   To learn more, visit http://lurie.brandeis.edu/women/index.html .   Click on the links below to access the YouTube videos: Mammography : http://www.youtube.com/watch?v=jgTrbWUdclg Pap Test: http://www.youtube.com/watch?v=s9ylkUuKcXQ&feature=relmfu Screening Plans: http://www.youtube.com/watch?v=-FER-RCwZNA&feature=relmfu

This  recorded slide program , Reproductive Health Care for Women with Disabilities  assists women's health care clinicians with office skills to assist with their care of women with physical, developmental or sensory disabilities giving specific information for reproductive health care. This program was recorded by Raymond L Cox, Jr., MD, MBA, FACOG and Caroline Signore, MD, MPH, FACOG. Elisabeth Quint, MD, FACOG served as faculty chair. A Powerpoint presentation with scripted notes is available for download.  : Disability facts Sexuality The GYN examination            Psychosocial issues GYN Health Screening Contraception Menses and AUB Pregnancy and Parenting BladderBowel Considerations Diet, Weight and Exercise Adolescent Issues Aging and Osteoporosis Mobility disabilities Intellectual and Developmental Disabilities Sensory Disabilities ADA Requirements and Incentives Disability Culture Access and Office Solutions Extensive Resources

  Part 1 includes an overview of the program, The Scope of Disability in Women, and Psychosocial Issues . Part 2 includes The GYN Examination,   GYN Health Screening, Sexually Transmitted Disease and Skin Examination Part 3  encompasses Medical and Reproductive Considerations. Modules include: Contraception; Menses and Abnormal Uterine Bleeding; Pregnancy and Parenting; Urinary and Bowel Considerations; Diet, Physical Activity and Weight; Adolescent Health; and Aging and Osteoporosis.    Part 4 encompasses Reproductive Health Specific to Disability. Modules include: Spinal Cord Injury, Spina Bifida, Multiple Sclerosis, Cerebral Palsy, Intellectual and Developmental Disabilities, and Sensory Disabilities.   Part 5 encompasses Access to Health Care. Modules include: ADA Requirements and Incentives, Disability Culture, and  Universal Design/Office Practice Solutions   Part 6 is the Resources Section with links to resources for providers, patients and those who care for them.  Found online at: http://www.acog.org/About-ACOG/ACOG-Departments/Women-with-Disabilities/Interactive-site-for-clinicians-serving-women-with-disabilities

Post-Partum Depression Symptoms in Women with Disabilities Women with disabilities are at a greater risk of experiencing symptoms of postpartum depression than other women. Screening for PPD among new mothers with disabilities and timely referral of those with PPD diagnosis are vital to the health of mothers with disabilities and their children.

Parenting with a mental health condition How you can help: A Toolkit For Families. A Resource for Families Supporting Children, Youth and Adults with a Mental or Substance Use Disorder https://www.heretohelp.bc.ca/sites/default/files/images/family_toolkit_full.pdf Temple University Collaboration provides a wide range of training and a very practical information toolkit to assist parents with mental health conditions http://www.tucollaborative.org/parenting/

National Research Center for Parents with Disabilities, 2017. www.centerforparentswithdisabilities.org Provides fact sheets and webinars designed specifically for parents with disabilities, prospective parents with disabilities, social workers, and lawyers. Lots of practical informationKnow Your Rights: Advocacy Strategies for Parents with DisabilitiesDeaf Parents' Approaches to Parenting How Prospective Parents with Disabilities Can Prepare for ParenthoodFamily Mental Health Begins with ParentsWorking with Parents with Intellectual Disabilities and Their Families: Strategies and Solutions for Social WorkersRepresenting Parents with Intellectual Disabilities and their Families: Strategies and Solutions for Attorneys

Oklahoma ABLE Tech800-257-1705

Adapted Baby Crib Helpful for parents with decreased mobility and other physical limitations such as back pain. Crib is modified so that the front gate slides Height of crib is raised so that a parent in a wheelchair can roll directly to the edge of the crib and safely transfer an infant or toddler between the crib and their lap

Adapted Changing Table A height-adjustable table to accommodate the need to sit while changing diapers. The storage compartment can be used to store diapering supplies or can be removed if it hinders parents from rolling a wheelchair up under it.

Baby Care Rollator – with feeding seat Rollator walker with a feeding seat attached. Useful for parents who have difficult carrying their child Baby can be placed securely in the seat while parents use the walker for support as they walk. For newborn children, a rollator with a bouncy seat attached is available.

Baby Cry Signaler Helpful for parents who are deaf or hearing impaired Alerts parents to a baby’s cry and can be adjusted to alert for quieter noises as well Provides a signal that the parent can receive through visual or tactile senses

DigiScan Infrared Talking Thermometer Helpful for parents with visual impairmentsInstantly speaks the temperature results Red indicator lights when a fever is detectedMay also be helpful for a parent with an intellectual disability

Infant Pacifier Thermometer Helpful for parents who are unable to physically hold a thermometer in place May also be helpful for a parent with an intellectual disability

Assistive Technology for Parents with Disabilitieshttp://idahoat.org/Portals/60/Documents/Services/Resources/AT_ParentsHandbook.pdf A practical guide that offers room by room suggestions for technology that can help with parenting tasks. Source: The Idaho Assistive Technology Project

“Moment of Need” Help Parent with Disability Resource Teams are available to assist providers with cases that include a parent with a disability:What will the team do: Help the presenting professional understand the nature of the parent’s disability.Discuss how services can be adapted to meet the family’s unique needs.Recommend disability resources that may benefit the family.Recommend community resources that may benefit the family and discuss ways to make the programs accessible to the parent. Brainstorm solutions to specific challenges and/or safety concerns that the parent/family are facing. Whenever possible, help identify or nurture potential long term supports within the parent’s natural environment or areas of interest. PwDRT Team Contact Points: (see map) DHS Region 1 (yellow) - Deana Wilson @ deana-wilson@ouhsc.edu DHS Region 2 (orange) – Janet Wilson @ janet-m-wilson@ouhsc.edu DHS Region 3 (red) - Lori Wathen @ lori-wathen@ouhsc.edu DHS Region 4 (green) – 1-877-441-0434 DHS Region 5 (blue) – Erin Strayhorn @ erin-strayhorn@ouhsc.edu

Information ….. for you, the parents, & their natural supportsResource guide for providers supporting parents with disabilities http://soonersuccess.ouhsc.edu/ServicesPrograms/SupportingParentswithDisabilities.aspx Supporting Oklahoma Parents with Disabilities https://www.facebook.com/OKpwd/

Questions? Lisa Simmons, Project CoordinatorSooner SUCCESSLisa-simmons@ouhsc.edu 580-747-1004