Journeys in Healthcare from a Youth Perspective

Family Voices presents the first of it’s series; “Journeys in Healthcare, from a Youth Perspective”. In this episode, Brennan shares about his journey with hypertrophic cardiomyopathy, which is a type of heart disease. He shares how his health has impacted his life, the barriers he faced and is currently facing, and what he learned through his healthcare journey and would like to share with others. Follow Family Voices of Washington to see more interviews with youth with special healthcare needs share their story.

Parents with Disabilities Have Rights

Brief overview:

  • For nearly 100 years, parents with disabilities have experienced fewer rights than their non-disabled peers.
  • The Rehabilitation Act of 1973 (Section 504) and Title II of the Americans with Disabilities Act (ADA) protect parents and prospective parents with disabilities from unlawful discrimination in the administration of child welfare programs, activities, and services.
  • Despite legal protections, parents with disabilities still are referred to child welfare services and permanently separated from their children at disproportionately high rates.
  • Parents who believe they have experienced discrimination may file an ADA complaint online, by mail, or by fax. Another option is to file a complaint with the Office for Civil Rights through the Department of Health and Human Services (HHS). Read on for details about how and where complaints are filed.

Full Article

In 1923, the Supreme Court of the United States (SCOTUS) established parental rights, but four years later parents with disabilities were denied those protections. In Buck v. Bell, May 2, 1927, SCOTUS ruled that persons with disabilities do not have fundamental rights to make private decisions regarding family life. The Americans with Disabilities Act (ADA) in 1990 attempted to correct some disparities, but parents with disabilities still have their children removed from their homes at disproportionate rates.

Here are a few Facts About Disability Rights for Parents, compiled by the National Council on Disability and the Christopher and Dana Reeve Foundation:

  • In the United States, 4.1 million parents have disabilities.
  • 1 in 10 children have a parent with a disability.
  • 5.6 million Americans live with paralysis from stroke, multiple sclerosis, spinal cord injury, traumatic brain injury, neurofibromatosis, cerebral palsy, post-polio syndrome or other issues.
  • 35 states include disability as grounds for termination of parental rights.
  • Two-thirds of dependency statutes allow courts to determine a parent unfit, based on disability.
  • In every state, disability of the parent can be included in determining the best interest of the child.
  • The District of Columbia, Georgia, Kansas, Maryland, Mississippi, North Dakota, New Mexico, Ohio, Oklahoma, and South Carolina allow physical disability as the sole grounds for terminating parental rights, without evidence of abuse or neglect.

The ADA prohibits discrimination based on disability

The ADA makes it unlawful to discriminate against individuals with disabilities in all areas of public life, including jobs, schools and transportation. The federal law, which is upheld by the Office for Civil Rights, covers all public and private places that are open to the general public. Under the ADA, people with disabilities have the right to equitable access. Equity doesn’t mean equal: It means that accommodations are provided to ensure access to something that everyone else has access to.

In 2008, the Americans with Disabilities Act Amendments Act (ADAAA) was signed into law. The ADAAA made significant changes to the definition of disability. The ADA is organized in sections called “Titles,” and the ADAAA changes applied to three Titles of the ADA:

  • Title I: Covers employment practices of private employers with 15 or more employees, state and local governments, employment agencies, labor unions, agents of the employer and joint management labor committees
  • Title II: Covers programs and activities of state and local government entities, including child welfare agencies and court systems
  • Title III: Covers private entities that are considered places of public accommodation

Equitable parenting opportunities are a Civil Right

Title II of the ADA and Section 504 of the Rehabilitation Act of 1973 protect parents and prospective parents with disabilities from unlawful discrimination in the administration of child welfare programs, activities, and services. Section 504 also protects students with disabilities, and PAVE has an article about that.

The goal of the ADA and Section 504 as it applies to parents and prospective parents is to ensure equitable access to parenting opportunities.  Also, these Civil Rights laws recognize that separation of parents from their children can result in long-term negative outcomes. The ADA requires child welfare agencies to:

  • Give a fair chance to parents with disabilities so they can take part in programs, services, or activities. 
  • Provide help to make sure people with disabilities understand what is being said or done.
  • Prevent barriers that make programs, activities or services hard to access because of disability.

Title II of the ADA and Section 504 also protect “companions”—people who help individuals involved in the child welfare system. A companion may include any family member, friend, or associate of the person who is seeking or receives child welfare services. For example, if a helper person is deaf, the child welfare agency provides appropriate auxiliary aids and services to ensure effective communication.

Discrimination leads to family separation

According to a comprehensive 2012 report from the National Council on Disability (NCD), parents with disabilities are often inappropriately referred to child welfare services. Once involved, these agencies permanently separate families impacted by disability at disproportionately high rates.

According to the report, discrimination most commonly involves parents with intellectual and psychiatric disabilities. Parents who are blind or deaf also report significant discrimination in the custody process, as do parents with other physical disabilities. Individuals with disabilities seeking to become foster or adoptive parents encounter bias and barriers to foster care and adoption placements. The NCD linked the discrimination to stereotypes and speculation about parenting ability rather than evidence of problems in the home. The agency found a lack of individualized assessments and that many families weren’t receiving needed services.

The ADA and Section 504 provide Civil Rights protections against retaliation or coercion for anyone who exercises anti-discrimination rights. ADA complaints can be filed online, by mail, or by fax.

To file an ADA complaint online:

Americans with Disabilities Act Discrimination Online Complaint Form | (en Español)
Instructions for submitting attachments are on the form.

To file an ADA complaint by mail, send the completed ADA complaint form to:

US Department of Justice 
950 Pennsylvania Avenue, NW
Civil Rights Division 
Disability Rights Section – 1425 NYAV
Washington, D.C. 20530

To file an ADA complaint by facsimile, fax the completed ADA complaint form to: (202) 307-1197

Individuals also may file complaints with the Office for Civil Rights at the Department of Health and Human Services (HHS). For instructions to file in English or other languages, go to How to File a Civil Rights Complaint.

Always save a copy of the complaint and all original documents.

For more information about the ADA and Section 504, call the Department of Justice ADA information line: 800-514-0301 or 800-514-0383 (TDD), or access the ADA website.

Visit the following websites for additional information:

Parenting with a Disability: Know Your Rights Toolkit

Protection from Discrimination in Child Welfare Activities

Children’s Bureau – An Office of the Administration for Children and Families

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children

Parental Disability and Child Welfare in the Native American Community

Protecting the Rights of Parents and Prospective Parents with Disabilities

 

Self-Care is Critical for Caregivers with Unique Challenges

Consider that 20 percent of the population has a disability. That’s one-fifth of all people who need extra support! Caregivers for those high-needs individuals may experience compassion fatigue and stress at high levels. National Geographic’s film, Stress, Portrait of a Killer, provides an overview of the risks and includes a story of parents who care for a child with special needs (See Minute 38 for that section of the report). 

The way to manage chronic stress is consistent self-care. Here are ways to stay mentally and physically healthy. In other words, here’s how caregivers can pull on that oxygen mask first in order to be well enough to assist others!

1. Connect

Meet up with people who get what you are going through. Schedule coffee with another parent with similar challenges on a regular basis. Parents often find each other at school, but here are other ideas about where you might find one another: Special Olympics practice, Special Needs Parent-Teacher Association, extracurricular events. A local Parent-to-Parent network can help by matching parents with similar interests or by providing a regular parent-group meeting.  

2. Sleep

The body uses sleep to recover, heal, and process stress. Here are ideas if anxiety or intrusive thinking interrupts sleep: Turn off screens after 7 p.m.—or use a blue-light filter; find sleep-music beats or a hypnosis program online; drink a calming herbal tea, such as chamomile; journal to process thoughts before bed. For more ideas, visit Sleepfoundation.org.

3. Exercise

Go for a walk, practice yoga, swim, wrestle with your kids, chop wood, work in the yard, or have a living-room dance party. Moving releases feel-good body chemicals. Check out the Mayo Clinic for more information on exercise and stress.

4. Be Mindful

Mindfulness can be as simple as taking time to notice your breath and focus attention there. Other ways to focus the mind for a general calming benefit: meditate, color, work on a car, build something, do art, put together a puzzle. The key is to find a quiet place that feels nurturing and calming. For more resources, check out mindful.org.

5. Make Time

An overfull calendar or unscheduled chaos can take over the day. A carefully organized calendar, managed with realistic boundaries, can help: If someone requests time, the calendar clearly shows when a meeting is possible. Parents can set SMART goals for a day, week or month: Assess whether the goals are Specific, Measurable, Achievable, Relevant and bound by a clear Timeframe. PAVE’s article on SMART Goals can help parents manage time while learning about how to assist with educational planning. Another resource with time-management tools: calendar.com: Why Stress Management and Time Management Go Hand in Hand.

6. Seek Help

Respite care provides temporary relief for a primary caregiver. In Washington State, a resource to find respite providers is Lifespan Respite. Parents of children with disabilities can apply through the Developmental Disabilities Administration (DDA) to seek eligibility for in- home personal care services and to request a waiver for respite care. For further detail about how to access services, refer to wapave.org DDA Access video or Informingfamilies.org DDA services.

Response to Intervention (RTI) – Support for Struggling Students

Brief overview

  • Students struggle in school for different reasons.
  • RTI is an acceptable way of identifying students with learning disabilities.
  • RTI isn’t a specific program or type of teaching.
  • RTI works on a tier system with three levels of intervention.

Full Article

Students struggle in school for different reasons. Response to Intervention (RTI)  can help by combining high quality, culturally responsive instructions with assessments and interventions that are proven to work by evidence from research.

RTI was originally recognized in the 1970s as a system for helping students with potential learning problems early, instead of waiting until they fail. With the reauthorization of the Individuals with Disabilities Education Act (IDEA) in 2004, RTI was noted as an acceptable way to identify students with learning disabilities. RTI can help students who haven’t yet been identified as eligible for special education or those who struggle but don’t qualify for special education services.

At any time during the RTI process, parents or teachers can request an evaluation for special education services.  The evaluation can determine whether a student qualifies for an Individualized Education Program (IEP) or accommodations through a Section 504 Plan. RTI does not replace a school’s responsibility to evaluate students who might qualify for special education services. See PAVE’s article on Child Find, a mandate of the Individuals with Disabilities Education Act (IDEA).

RTI’s goal is for schools to intervene before a student falls too far behind. RTI is not a specific program or type of teaching, but rather a proactive way to check in with a student to see how things are going. Data help school staff decide which types of targeted teaching would work best for the student. If a student’s progress is slow or stagnant, then teachers adjust based on the student’s needs. 

RTI has three levels, or tiers, for intervention:

  • In the general education classroom
  • In a special education classroom, resource room, or small group
  • For an individual student

RTI works best when parents are involved

Parents can monitor their child’s progress and participate in the process. Parents can talk to the school about which instructions or reinforcements are working and boost the benefit by being consistent with the same strategies at home.

As military families move from one location to another, they may notice that each school uses different techniques to implement RTI programs.  Schools will format their programs to best fit the needs of their students by using a variety of tools to improve learning for all students. Keeping up with what’s happening at school might be challenging but can help the student find success.

RTI is part of a Multi-Tiered System of Supports (MTSS) framework.  MTSS provides a method for intervention in academic and non-academic areas, including Social Emotional Learning or behavior support. MTSS is used to support adult students and professionals as well. In this video, a researcher from the American Institutes for Research, Rebecca Zumeta Edmonds, Ph.D., discusses differences between MTSS and RTI.

PAVE has an article that describes MTSS and how it can provide a larger framework for Positive Behavior Interventions and Supports (PBIS), when a child’s behavior becomes a barrier to learning.

For more information on RTI, MTSS, and PBIS:

The Three RTI Tiers

Center on Response to Intervention

Response to Intervention (RTI)

 What is the Difference Between RTI and MTSS?

MTSS: What You Need to Know

Positive Behavioral Interventions & Supports (PBIS) in Schools

I want the kind with the people and the pictures

By John O’Brien

After a Difficult Start…

Institutionalized from age three to twenty-three in a place where “they treated us like animals”– Mike has composed a good life, taking many valued roles: husband, father, worker, home owner, friend, organizer, advocate, mentor, teacher, neighbor.[1] Anticipating the changes that come with aging, Mike requested funding for a person-centered plan from his case manager (a service option in his state). The case manager said that it was unnecessary for him to spend any of his budget on a plan because a new Federal Rule requires that Mike’s annual plan of care meeting be a person-centered plan. Mike, who has participated in many person-centered plans organized through self-advocacy, asked some questions about the required plan and concluded, “I still want the kind with the people and the pictures.”

Regulations that require a person-centered plan as a condition of receiving Medicaid Waiver funds introduce a distinction between Want-to-plans and Have-to-plans. Each can make a positive contribution; both must creatively respond to constraints. A good Want-to-plan supports discovery of possibilities and life direction and mobilizes a person’s allies at important moments in their lives. A good Have-to plan gives a person effective control of the Medicaid waiver funded assistance they rely on. Committed and skilled facilitators with the time necessary to prepare and follow-up make a difference to the impact of both kinds of plan. How well either process works for a person depends on conditions outside the planning process: the extent, diversity and resourcefulness of the person’s social network; the openness of the person’s community; the flexibility and responsiveness of providers of necessary assistance; the sufficiency of public funds for necessary assistance and the means for people to control those funds. Good plans will identify the current reality of these conditions and consider how to engage them.

Mike’s is a want-to-plan. At his initiative, he and his invited allies (the people) collaborate to create a customized process to address his desire to deal proactively with the new responsibilities and increasing impairments that show up with aging. Mike chose Michele, an experienced facilitator, to guide the process. Their agreement makes it clear that Michele is responsible for facilitating a process of change over time, not just a meeting.[1] A graphic record (the pictures), created by Alex, provides an energizing memory of what emerges, a way to track and update action plans, and a way to orient new people to Mike’s intentions.[2] Occasional check-ins and revisions guide continuing action. One-to-one meetings assist Mike in sorting through all the suggestions and offers of help he receives to assure a good fit with who he is. Mike will bring some the information generated by this work to inform the required annual person-centered support plan, but his Want-to-Plan does not substitute for it.

Mike’s experience unfolds under highly favorable conditions for any person-centered plan. He has a strong desire to assure his wife and himself the best possible old age. Reciprocity for decades of generous neighborliness, concern for co-workers and leadership in advocacy give him a diverse network to call on. He is not inhibited in asking for help when he needs it. The help he needs is largely with navigating the unfamiliar territory of selling and buying property and preparing wills and other necessary documents and demands no change in his current paid services. Hard work and careful management has accumulated equity in family home. Many Want-to-plans will need to include provision for strengthening or establishing the social and material conditions for moving toward a desirable future.

Want-to-plans can also originate in a person’s positive response to an invitation to join a process of organizational change. This sort of plan poses a challenge that an organization must stretch its capacities to meet.

Have-to-plans are a necessary step in determining expenditure of Medicaid funds on services to meet the assessed needs of eligible people. They are the final responsibility of system staff assigned to coordinate services. While the process can vary to accommodate a person’s preferences, the process and resulting plan must comply with detailed standards. The New York OPWDD Person Centered Planning Regulation Checklist enumerates 23 requirements, 21 of which track US Federal Regulations.[3]

Have-to-plans serve a worthy purpose. The rules set conditions for the person to direct the meeting, understand the results and assure that the person-centered service plan documents the person’s needs strengths, preferences, goals and appropriate services.

This checklist item, based on a Federal requirement, identifies the intended result of Have-to plans:

2‐5. The plan documents the necessary and appropriate services and supports that are based on the individual’s preferences and needs and which will assist the person to achieve his/her identified goals. [Complies with CFR 441.301©(2)(v)]

This form of words sets Have-to-plans in the context of publicly funded disability services. Offering increased influence on which available provider(s) will serve a person and how those services will be of assistance is a clear benefit of Have-to-plans when there is a real choice among providers with a capacity to individualize supports.

This standard also locates a tension that constrains Have-to-plans as two impulses struggle with each other within the same sentence. One impulse, energized by commitment to self direction and the development of people’s strengths, expresses the life a person wants to live and the supports that they prefer to live that life. The other, tied to the historical anomaly of funding US disability support as if it were a medical service, aims to select necessary and appropriate services that are clearly linked to professionally assessed need. State policy can bias the struggle toward one impulse or the other. In some states[1] the person centered plan is bracketed between an assessment of need that involves an extensive inventory of a person’s deficiencies and writing an Individualized Service Plan (ISP) that must demonstrate a direct connection between assessed need and specified services and avoid public funding of “wants” or “lifestyle choices”. Without the skillful facilitation of an intentional shift in perspective, a Have-to-plan will be primed by a focus on deficiencies and develop within unconscious boundaries set by judgements of what can realistically be funded.

A Want-to-plan can safeguard a Have-to-plan. A person and those who care can choose to create a space outside the world of disability services for conversation about a person’s identity, gifts and capacities and the circumstances that offer the best life chances. Often, as with Mike, some action will result from this conversation that requires no change in publicly funded services. When the sort of changes in services that require a Have-to-plan are necessary, a person and their allies have a foundation for negotiating what they need from publicly funded services.

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[1] See for example, NJ Division of Developmental Disabilities (March 2016). Supports Program Policies & Procedures Manual (Version 3.0).

[1] Other agreements might suit other circumstances. A different person might agree to fill the necessary follow up role.

[2] Denigrating graphic records has become a cliche criticism of person-centered planning (“people have colorful pictures on their walls but their lives are unchanged”). Lack of commitment or capacity for creative action seem to me more likely causes of inaction than a vivid record of people’s thinking does.

[3] http://www.opwdd.ny.gov/sites/default/files/documents/PCPChecklist.pdfThe 22nd standard, specific to New York, defines a person-centered planning process as a right and requires written notice of that right. The 23d assures that all relevant attachments are filed with the plan. The rule itself, Medicaid Program; State Plan Home and Community-Based Services, 5-Year Period for Waivers, Provider Payment

Reassignment, and Home and Community-Based Setting Requirements for Community First Choice (Section 1915(k) of the Act) and Home and Community-Based Services (HCBS) Waivers (Section 1915(c) of the Act), was published in the Federal Register on January 16, 2014.

[1] You can view Mike’s witness to growing up in an institution and a snapshot of his life today in this 2015 TV investigation into his state’s continuing operation of institutions: http://www.king5.com/news/local/ investigations/wash-decades-behind-in-serving-developmentally-disabled-1/48265785