impact of a child with disabilities on a family of a child with disabilities on a family texas aging...
TRANSCRIPT
![Page 1: Impact of a Child with Disabilities on a Family of a Child with Disabilities on a Family Texas Aging and Disability Resource Centers Training. February 10, 2015. Mary Klentzman. mary@cornerstone-ranch.com](https://reader031.vdocument.in/reader031/viewer/2022022003/5aa078b57f8b9a67178e459f/html5/thumbnails/1.jpg)
Impact of a Child with Disabilities on a Family
Texas Aging and Disability Resource Centers TrainingFebruary 10, 2015
Mary [email protected]
![Page 2: Impact of a Child with Disabilities on a Family of a Child with Disabilities on a Family Texas Aging and Disability Resource Centers Training. February 10, 2015. Mary Klentzman. mary@cornerstone-ranch.com](https://reader031.vdocument.in/reader031/viewer/2022022003/5aa078b57f8b9a67178e459f/html5/thumbnails/2.jpg)
Goals of this Presentation
• Give you a glimpse of challenges faced by families who have children with disabilities (understanding that there are numerous blessings as well!)
• Gain sensitivity to the needs of many of these families• Strategies to provide effective assistance
![Page 3: Impact of a Child with Disabilities on a Family of a Child with Disabilities on a Family Texas Aging and Disability Resource Centers Training. February 10, 2015. Mary Klentzman. mary@cornerstone-ranch.com](https://reader031.vdocument.in/reader031/viewer/2022022003/5aa078b57f8b9a67178e459f/html5/thumbnails/3.jpg)
Grieving Process Experienced by Parents of Children with Disabilities:
ShockDenial, Unrealistic HopeFearAngerBargainingGuiltSorrow and DepressionAcceptanceUnderstanding
![Page 4: Impact of a Child with Disabilities on a Family of a Child with Disabilities on a Family Texas Aging and Disability Resource Centers Training. February 10, 2015. Mary Klentzman. mary@cornerstone-ranch.com](https://reader031.vdocument.in/reader031/viewer/2022022003/5aa078b57f8b9a67178e459f/html5/thumbnails/4.jpg)
Sibling Concerns
![Page 5: Impact of a Child with Disabilities on a Family of a Child with Disabilities on a Family Texas Aging and Disability Resource Centers Training. February 10, 2015. Mary Klentzman. mary@cornerstone-ranch.com](https://reader031.vdocument.in/reader031/viewer/2022022003/5aa078b57f8b9a67178e459f/html5/thumbnails/5.jpg)
Financial ConstraintsCost of 1 month supply:Pediasure formula - $330Feeding bags - $150
Cost of custom manualwheelchair –
$6,000 - $15,000
![Page 6: Impact of a Child with Disabilities on a Family of a Child with Disabilities on a Family Texas Aging and Disability Resource Centers Training. February 10, 2015. Mary Klentzman. mary@cornerstone-ranch.com](https://reader031.vdocument.in/reader031/viewer/2022022003/5aa078b57f8b9a67178e459f/html5/thumbnails/6.jpg)
School Roadblocks and Frustrations
Difficulty Finding and Keeping Good Child Care
![Page 7: Impact of a Child with Disabilities on a Family of a Child with Disabilities on a Family Texas Aging and Disability Resource Centers Training. February 10, 2015. Mary Klentzman. mary@cornerstone-ranch.com](https://reader031.vdocument.in/reader031/viewer/2022022003/5aa078b57f8b9a67178e459f/html5/thumbnails/7.jpg)
Sleep Depravation
![Page 8: Impact of a Child with Disabilities on a Family of a Child with Disabilities on a Family Texas Aging and Disability Resource Centers Training. February 10, 2015. Mary Klentzman. mary@cornerstone-ranch.com](https://reader031.vdocument.in/reader031/viewer/2022022003/5aa078b57f8b9a67178e459f/html5/thumbnails/8.jpg)
Marriage Difficulties
No time for each other
Grieving at different times in different ways
Dads typically have harder time handling diagnosis
![Page 9: Impact of a Child with Disabilities on a Family of a Child with Disabilities on a Family Texas Aging and Disability Resource Centers Training. February 10, 2015. Mary Klentzman. mary@cornerstone-ranch.com](https://reader031.vdocument.in/reader031/viewer/2022022003/5aa078b57f8b9a67178e459f/html5/thumbnails/9.jpg)
Demands from Professionals
(Doctors, therapists, teachers, social workers, etc.)
![Page 10: Impact of a Child with Disabilities on a Family of a Child with Disabilities on a Family Texas Aging and Disability Resource Centers Training. February 10, 2015. Mary Klentzman. mary@cornerstone-ranch.com](https://reader031.vdocument.in/reader031/viewer/2022022003/5aa078b57f8b9a67178e459f/html5/thumbnails/10.jpg)
Nursing Care
![Page 11: Impact of a Child with Disabilities on a Family of a Child with Disabilities on a Family Texas Aging and Disability Resource Centers Training. February 10, 2015. Mary Klentzman. mary@cornerstone-ranch.com](https://reader031.vdocument.in/reader031/viewer/2022022003/5aa078b57f8b9a67178e459f/html5/thumbnails/11.jpg)
Guilt
Fears
Isolation
Never ending responsibilities night or day
![Page 12: Impact of a Child with Disabilities on a Family of a Child with Disabilities on a Family Texas Aging and Disability Resource Centers Training. February 10, 2015. Mary Klentzman. mary@cornerstone-ranch.com](https://reader031.vdocument.in/reader031/viewer/2022022003/5aa078b57f8b9a67178e459f/html5/thumbnails/12.jpg)
Ways You Can Make a Difference
Strategies for ADRC’s to Provide Effective Assistance
![Page 13: Impact of a Child with Disabilities on a Family of a Child with Disabilities on a Family Texas Aging and Disability Resource Centers Training. February 10, 2015. Mary Klentzman. mary@cornerstone-ranch.com](https://reader031.vdocument.in/reader031/viewer/2022022003/5aa078b57f8b9a67178e459f/html5/thumbnails/13.jpg)
1. Listen with willingness to dig deep to gain a better understanding of what is really needed.
2. Problem solve.
![Page 14: Impact of a Child with Disabilities on a Family of a Child with Disabilities on a Family Texas Aging and Disability Resource Centers Training. February 10, 2015. Mary Klentzman. mary@cornerstone-ranch.com](https://reader031.vdocument.in/reader031/viewer/2022022003/5aa078b57f8b9a67178e459f/html5/thumbnails/14.jpg)
3. Instead of just giving a referral, call resource ahead to make sure this is the right place/person to help individual.
4. Call back to let them know the correct resource information so they aren’t passed around and around.
5. Follow up to find out if resource was helpful.
![Page 15: Impact of a Child with Disabilities on a Family of a Child with Disabilities on a Family Texas Aging and Disability Resource Centers Training. February 10, 2015. Mary Klentzman. mary@cornerstone-ranch.com](https://reader031.vdocument.in/reader031/viewer/2022022003/5aa078b57f8b9a67178e459f/html5/thumbnails/15.jpg)
6. Avoid being judgmental and taking the role of gatekeeper of resources.
—Understand that some of the barriers aren’t willful. (Appointments missed can be due to life issues rather than just being belligerent.)
—Don’t make judgments regarding what a person needs (IPad for communication, alternative pain management help such as massage). Families are often denied resources by the very people who are in place to help.
![Page 16: Impact of a Child with Disabilities on a Family of a Child with Disabilities on a Family Texas Aging and Disability Resource Centers Training. February 10, 2015. Mary Klentzman. mary@cornerstone-ranch.com](https://reader031.vdocument.in/reader031/viewer/2022022003/5aa078b57f8b9a67178e459f/html5/thumbnails/16.jpg)
7. Have a working knowledge of resources, such as Medicaid and special education;
AND/OR
8. Know who the experts are who have this information in your community. Develop relationships with the experts in your community.
![Page 17: Impact of a Child with Disabilities on a Family of a Child with Disabilities on a Family Texas Aging and Disability Resource Centers Training. February 10, 2015. Mary Klentzman. mary@cornerstone-ranch.com](https://reader031.vdocument.in/reader031/viewer/2022022003/5aa078b57f8b9a67178e459f/html5/thumbnails/17.jpg)
Examples of Statewide Community Experts in Children’s Resources:
Children with Special Health Care Needs Contractors: https://www.dshs.state.tx.us/cshcn/community-based-contractors.shtm
Texas Parent to Parent: www.txp2p.org
![Page 18: Impact of a Child with Disabilities on a Family of a Child with Disabilities on a Family Texas Aging and Disability Resource Centers Training. February 10, 2015. Mary Klentzman. mary@cornerstone-ranch.com](https://reader031.vdocument.in/reader031/viewer/2022022003/5aa078b57f8b9a67178e459f/html5/thumbnails/18.jpg)
9. Human answer the phone and not just web-based information.
10. If a phone message must be left, put a warm message –“We want to hear from you.” “We will call you back.”
11. Admit when you don’t know the answers to callers’ questions. Tell them you will do your best to find resources to help.
![Page 19: Impact of a Child with Disabilities on a Family of a Child with Disabilities on a Family Texas Aging and Disability Resource Centers Training. February 10, 2015. Mary Klentzman. mary@cornerstone-ranch.com](https://reader031.vdocument.in/reader031/viewer/2022022003/5aa078b57f8b9a67178e459f/html5/thumbnails/19.jpg)
12. Avoid using acronyms. Use common everyday terminology.
13. Educate the local medical community to look for and be sensitive to respite needs of caregivers. Provide them with respite resource information.
![Page 20: Impact of a Child with Disabilities on a Family of a Child with Disabilities on a Family Texas Aging and Disability Resource Centers Training. February 10, 2015. Mary Klentzman. mary@cornerstone-ranch.com](https://reader031.vdocument.in/reader031/viewer/2022022003/5aa078b57f8b9a67178e459f/html5/thumbnails/20.jpg)
Questions