Wednesday, June 1, 2016

How family caregivers can advocate for their child - and help other parents too!




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Part 2 of 2.  Last month’s blog covered advocacy for children with special needs.  Many parents move from individual to systems advocacy and end up helping other families in the process.   

Individual vs. Systems Advocacy

There are various systems that parents have to navigate, including education, healthcare, and family support. Parents may find after their struggles that they don’t want other families to have to go through the same thing.  I got started when my daughter was originally denied SSI (Supplemental Security Income) because she “wasn’t disabled enough” even though she almost died.  I thought this was a clear misinterpretation of the letter and intent of the law.  Our early intervention program was asking parents for letters if they had a hard time getting SSI for their children with disabilities.  Doing this was the first step on my journey as an advocate.    


Ways to Advocate 

Parents of children with special needs can start slowly and build up their advocacy efforts as time allows.  It could just be a response to an “action alert” from a family support or disability organization.  These will usually have “talking points” and sometimes a sample letter to use.  That way families can know what the key concerns are that need to be addressed.  Parents can also serve on the committees or boards of these organizations. 

Another good way to raise awareness of an issue is to write a letter to the editor of your local paper.  Make sure to follow the guidelines like word count for length, etc.  Also, be careful about divulging too much private information because your name/address will be used for publication. 

Contacting state or federal legislators, and making public comments at boards of education or hearings on issues such as Maternal and Child Health Block Grant application hearings, is another way to get involved.  Usually these are for systemic, not individual issues, but if parents have tried everything else speaking up in these forums could be a good last resort for help.  So for example if the issue is in a child’s school and is happening to other families, parents can speak at their district board of education.  If it’s a more widespread issue happening statewide in special education, families can speak at the state Board of Education meeting.  If the issue is about Medicaid, participating in or attending – and speak up at – HMO Advisory meetings, or State Medicaid Advisory Councils, can help parents tell their own stories to achieve a public policy purpose that will help many other families.  Again, action alerts from disability organizations will help families know when there are opportunities to testify.


 Where to Find Advocacy Opportunities 

For education, each state has a designated Parent Training and Information Center.  They help parents with individual advocacy but also with systemic issues.  For healthcare, there are Family Voices/Family-to-Family Health Information Centers in each state.  For family support for developmental disabilities, there are governor’s councils in each state.  Disability Rights (also known as Protection and Advocacy) agencies help with individual advocacy but also systems issues.  Disability organizations like The Arc, or even those that just cover a single disability like autism, can be good places to get information on issues affecting children with special needs.  Once children are older (age 14 and above), Centers for Independent Living are good places not just for individual help but addressing systemic issues regarding independent living.  It is also important that families help their child learn to self-advocate.  Wrightslaw has a publication for families titled “From Emotions to Advocacy.”  There is also a free online course called “Serving on Groups.” Lastly, there is another free online course for families called “Partners in Policymaking” which helps parents to learn how to advocate effectively. 


Family caregivers need to remember that by advocating for their child they are making some progress in whichever system is serving their child.  But by getting involved in systems advocacy, they are helping change everything for everyone.  Family caregivers can help not only their child but other families of children with disabilities, through systems advocacy.

Resources:
Parent Training and Information Centers
http://www.parentcenterhub.org/find-your-center/

 
 
Family Voices/Family-to-Family Health Information Centers
 



National Association of Councils on Developmental Disabilities
http://www.nacdd.org/

 
 
National Disability Rights Network
 
 
 
National Council on Independent Living
 
 
Wrightslaw “From Emotions to Advocacy”
 
 
 
Serving on Groups – free online course
 
 
 
 
Partners in Policymaking – free online course
 


 
Remain Hopeful,

Lauren

 Lauren Agoratus is a parent/advocate who works for the Statewide Parent Advocacy Network and serves as the NJ Coordinator for Family Voices (www.spanadvocacy.org), a national network that works to “keep families at the center of children’s healthcare” at www.familyvoices.org or FB www.facebook.com/pages/Family-Voices-Inc-National/137783182902269.  She also serves as NJ representative supporting caregivers across the lifespan for the Caregiver Action Network (formerly National Family Caregivers Association) in a volunteer capacity at http://caregiveraction.org/ or FB www.facebook.com/CaregiverActionNetwork.

 

Sunday, May 1, 2016

When Family Caregivers Need Help Navigating the Systems Helping Their Child




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When trying to get services for their children with special needs, family caregivers may run into roadblocks.  There are organizations that can help for free, but sometimes a paid advocate or even a lawyer is needed. 
 
 
When or why would family caregivers need help?
 
There are various systems that parents have to navigate, including education, healthcare, and family support.  Sometimes all it takes is a phone call to an organization to find out what the system’s responsibilities are and what their child’s rights are.  Basic advocacy can be done by keeping good notes and documenting everything.  Sometimes, families need to send a letter confirming a conversation because otherwise there’s no proof of what was said.  Other times parents may need to send documents by certified/return receipt mail to prove it was received. 
 
Education
 
Sometimes parents end up disagreeing with their school district on instructional services, related services like therapies, or placement, from inclusion to resource room, a self-contained class or even out of district school.  There are Parent Training and Information Centers in every state that can offer free technical assistance/parent advising to families (see Resources for links below.)  If parents need more help, they can reach out to their state Protection and Advocacy agency.  Paid advocates and lawyers can be found through the Council of Parent Attorneys and Advocates. 
 
Health Care
 
Other times families may be struggling with getting medical equipment or other health care from their insurance company (whether it’s private or through Medicaid.)  Or perhaps they’re trying to apply for SSI (Supplemental Security Income.) Or maybe their child just got a new diagnosis.  There are Family Voices State Affiliates and Family-to-Family Health Information Centers in every state that offer free help to parents.  If the issue is still unresolved, the next step could be to contact free legal help from Disability Rights in each state (sometimes call Protection and Advocacy.) 
 
 
 
 
Family Support
 
Lastly some parents are dealing with state offices based on their child’s disability.  Sometimes all they need is to talk to another trained volunteer of a child with the same condition and these can be found through Parent-to-Parent.  In every state, there is also a Governor’s Council on Developmental Disability.  Lastly, for families going through transition to adult life, Centers for Independent Living can help maximize their child’s potential.  For free legal help if needed, Disability Rights in each state would help with these family support systems as well.      
 
 
 
Sometimes family caregivers just need to contact a local non-profit to find out more information.  Other times, parents may need a professional paid advocate or even an attorney.  By advocating for their child with special needs, families can get the services their child needs resulting in better outcomes.  Next month I’ll cover how parents can move from individual to systems advocacy to make positive changes for their family and other families like theirs. 
  
Resources:
Parent Training and Information Centers
 

 
 

 
 
Council of Parent Attorneys and Advocates (map)
 

 



 
 
Family Voices/Family-to-Family Health Information Centers
 
 
 
 
National Disability Rights Network
 
 
 
 
Parent-to-Parent
 







 
 
 
National Association of Councils on Developmental Disabilities
 
 
National Council on Independent Living

 

 
 
 
Remain Hopeful,
 
Lauren
 
 
Lauren Agoratus is a parent/advocate who works for the Statewide Parent Advocacy Network and serves as the NJ Coordinator for Family Voices (www.spanadvocacy.org), a national network that works to “keep families at the center of children’s healthcare” at www.familyvoices.org or FB www.facebook.com/pages/Family-Voices-Inc-National/137783182902269.  She also serves as NJ representative supporting caregivers across the lifespan for the Caregiver Action Network (formerly National Family Caregivers Association) in a volunteer capacity at http://caregiveraction.org/ or FB www.facebook.com/CaregiverActionNetwork.
 
 
 

Friday, April 1, 2016

How Family Caregivers can Teach their Child with Special Needs to Self-advocate in Health Care




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Last month I covered Supported Decision-Making in general.  One of the most difficult areas for children with disabilities to navigate is health care.  Many times doctors will continue to speak to parents, rather than the teen or young adult assuming that they may be unable to respond accurately to questions.  Find out how families can help their child self-advocate in the medical arena. 

Medical Appointments

Scheduling an appointment could be one of the easiest steps to take.  It is best to schedule a follow-up appointment while still at the provider’s office.  The parent could use a calendar (either hard copy or perhaps an app. on their phone) so the child can see which other activities are booked to avoid scheduling conflicts.

Participating in appointments can be started early.  Most children can answer the initial questions on their name and date of birth though some may need to practice this at home first.  They can also answer questions on symptoms, especially the typical yes/no questions like, “Have you had any headaches?  Upset stomach?,” etc.  Family Voices WI has factsheets on preparing children for doctor’s appointments at http://parentsreachingout.org/cd/pdfs_en/hc003.pdf or Spanish http://parentsreachingout.org/cd/pdfs_es/hc003_es.pdf.  As they get older, children can practice filling out forms. 

For children seeing multiple providers, it’s good to review at home the doctor’s name, specialty, and why they need to be seen.  A brief list of questions prepared ahead of time also helps appointments run more smoothly. 

Medications

Medication adherence is the single largest factor in preventing rehospitalization.  Medication alarms are available, and so are apps. for phones and tablets.  Children may be able to use a pill organizer with supervision along with a medication schedule.  A great online tool as well as app. is www.mymedschedule.com.  The schedule includes a picture of the medication, what it’s used for, and how much to take at what time.  It has a list for refilling the pill organizer too.

Another thing that older children can learn to do is call for refills.  They should be taught to look for when the bottle is almost empty and how to call the pharmacy-most have automated systems that are easy to use by just keying in the refill number.

It is important that families, and children, learn that they should ask for any interactions among medications.  This means that certain meds may have to be taken separately from others.

                                                    Photo mymedschedule.com

Medical Information

This is one of the most difficult items to navigate but again it helps if older children know why they’re seeing a specific doctor.  They should know to share the information related to that condition.  Again, they can start by answering simple questions by practicing at home and will learn how to answer harder questions as they get older. 

It’s a good idea to sign up for the doctor’s patient portal, if there is one.  Here, all of the health information for that provider will be located in one place.  It’s also a good idea to go over the after visit summary with the child to the best of their ability.

Children with complex needs should get medical id bracelets.  There are all sorts of trendy designs out now so children won’t feel like it stands out.

Sometimes it helps to make a separate paper or email list for:

  •  medications
  • medical conditions
  • providers
  • hospitalizations/surgeries

Organizing Health Information by Age:

Families/Young Children
The American Academy of Pediatrics has a “Build Your Own Care” Notebook for families at https://medicalhomeinfo.aap.org/tools-resources/Pages/For-Families.aspx.  Family Voices of NC also has a care notebook in English http://ecac-parentcenter.org/userfiles/F2F/Care%20Notebook%20FINAL%20ss%2012.1.09.pdf

A special resource for children who are hospitalized who want to express preferences:
“My Health Passport is available” developed by AUCD South Florida, in available in English at http://www.spannj.org/cyshcn/core_outcome_6/Health_Passport_English.pdf and Spanish at http://www.spannj.org/cyshcn/core_outcome_6/Health_Passport_Spanish.pdf



                                                    Photo AUCD S. Florida

Teens
Seattle Children’s Hospital has developed Care Plans for Teens at http://cshcn.org/planning-record-keeping/care-plans-for-teens/. 

Self-Advocates
Finally, self-advocates can use the Waisman Center’s “My Health Pocket Guide” at http://www.waisman.wisc.edu/cedd/pdfs/products/health/PG.pdf.  There is also “My Health, My Choice, My Responsibility” which includes forms for health information, health plans, and appointments at http://www.ablelinktech.com/myhealth/ as well as an iPad app. at http://www.ngsd.org/news/my-health-my-choice-my-responsibility-ipad-app.  The Boggs Center has “Being a Healthy Adult:  How to Advocate for your Health and Health Care” in English at http://www.spanadvocacy.org/content/being-healthy-adult-advocating-your-health-and-health-care and Spanish at http://www.spanadvocacy.org/sites/g/files/g524681/f/files/TransitiontoAdultHealthcare-SP-complete_0.pdf.
 
                                                               Photo Boggs Center

Insurance

Health care coverage is probably the most complex thing to learn.  Families can teach their child first to make sure they bring their card to each visit.  When they’re older, parents can teach them how to match up the bills with the explanation of benefits.  It’s particularly difficult if there is more than one insurance company for medical or other coverage.  Family Voices NH has tools on all of these topics to help children speak up for themselves regarding healthcare (see Resources.)

Summary

Learning how to self-advocate in health care is an essential step towards independence.  Children with special health care needs must start this process early which will result in better outcomes for their health as well as increasing independent living skills.

Resources:
Take Control of Your Health-
factsheets for youth on appointments, medications, health information, and insurance



                                                          Photo Family Voices NH


Remain Hopeful,

Lauren

Lauren Agoratus is a parent/advocate who works for the Statewide Parent Advocacy Network and serves as the NJ Coordinator for Family Voices (www.spanadvocacy.org), a national network that works to “keep families at the center of children’s healthcare” at www.familyvoices.org or FB www.facebook.com/pages/Family-Voices-Inc-National/137783182902269.  She also serves as NJ representative supporting caregivers across the lifespan for the Caregiver Action Network (formerly National Family Caregivers Association) in a volunteer capacity at http://caregiveraction.org/ or FB www.facebook.com/CaregiverActionNetwork.










Tuesday, March 1, 2016

Supported Decision-Making Can Benefit Children with Special Needs and Family Caregivers




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Children with special health care needs should have a choice in what happens in their lives, especially as they become adults.  There are things that family caregivers can do to help their child self-advocate and learn how to make good decisions.

Background

The “next generation” of self-determination is Supported Decision-Making.  This means that the individual makes his/her own decisions with the help of a supporter or a support team.  Children with special needs have different capabilities regarding decision-making, but they can make choices with support.  As adults, they should have a say in where they live, work, post-secondary education, etc.  Many family caregivers are advised to use the legal process of guardianship for their child, especially those with developmental or intellectual disabilities.  There is some flexibility in states using limited guardianships, but this still takes away many of the rights of individuals with disabilities.  Using Supported Decision-Making will let people with disabilities make the best choices in their lives, with support.

Alternatives to Guardianship

Advanced Directives

v  This documents choices for end-of-life care and are also called “living wills.”

Healthcare Proxy

v  This document is used for medical decisions.
 
Power-of-attorney

v  Another person has the control over legal decisions.  Note: a “durable” power-of-attorney can be revoked if the person has temporary incapacity.
 
Supported Decision- Making Agreements (some states have forms-See Resources)

v  Making decisions with assistance from a support person. 

How This Helps Family Caregivers 

Research has found that self-determination results in better health, independence, community inclusion, and understanding and opposition to potential abuse.[i]  On the other hand, guardianship may “have a “significant negative impact on . . . physical and mental health, longevity, ability to function, and reports of subjective wellbeing.”[ii]   

New initiatives emphasize “person-centered planning” and Supported Decision Making.  Person-centered planning considers the assets and preferences of the individual (See Resources.)  In healthcare, there is a new focus on “shared decision-making.”  Supported Decision-Making will apply to all areas of the person’s life and is thought of as “autonomy with support.”  Children with disabilities should be taught to self-advocate in order to have control over decisions throughout their lives.       

Now there are new options for family caregivers of children with special needs.  This is a personal decision for each family.  Even if the child will never live completely independently, it is essential that children with special needs get opportunities to make choices from an early age.  Children with disabilities should have as much input as they can, based on their abilities.  Supported decision-making follows the belief that “everyone has the right to make choices[iii].”

Resources: 

Alternatives to Guardianship factsheet-

REACH for Transition: Supported Decision-Making & Alternatives to Guardianship
http://www.spanadvocacy.org/content/supported-decision-making-and-alternatives-guardianship#overlay-context=content/workshopsevents


Getting the Community Life You Want: A Guide to Home and Community Based Services Advocacy

 
 
National Resource Center for Supported Decision-Making
 
 
 
Person-Centered Planning Tool
http://www.nj.gov/humanservices/ddd/documents/Documents%20for%20Web/PCPT%203-13-13.pdf


Supported Decision-Making Toolkit (including resources on forms)



*This is an edited version of my article in the forthcoming March issue of Exceptional Parent magazine at www.eparent.com.
 
Remain Hopeful,
 
Lauren
 
Lauren Agoratus is a parent/advocate who works for the Statewide Parent Advocacy Network and serves as the NJ Coordinator for Family Voices (www.spanadvocacy.org), a national network that works to “keep families at the center of children’s healthcare” at www.familyvoices.org or FB www.facebook.com/pages/Family-Voices-Inc-National/137783182902269.  She also serves as NJ representative supporting caregivers across the lifespan for the Caregiver Action Network (formerly National Family Caregivers Association) in a volunteer capacity at http://caregiveraction.org/ or FB www.facebook.com/CaregiverActionNetwork.


[i] Ishita Khemka, Linda Hickson, Gillian Reynolds Evaluation of a decision-making curriculum designed to empower women with mental retardation to resist abuse Am J Ment Retard. 2005 May;110(3):193-204.
Michale Wehmeyer, Michelle Schwartz Exceptional Children 1998, Vol. 63, No. 2, pp. 245-255.
Wehmeyer, M. L., Kelchner, K., & Richards, S. (1996). Essential characteristics of self-determined behaviors of adults with mental retardation and developmental disabilities. American Journal on Mental Retardation, 100, 632-642.
 
[ii] Jennifer L. Wright, Guardianship for Your Own Good:  Improving the Well-Being of Respondents and Wards in the USA, 33 Int’l J.L. & Psychiatry 350 (2010)
 
[iii] http://www.supporteddecisionmaking.org/