What role does the family play in a Shared Plan of Care?

Second in the Shared Plan of Care Series

At its core, the shared plan of care centers on the actions, needs, and goals of the patient and family. Without the family, a true shared plan of care would not exist. For this reason, a critical feature of a successful and comprehensive shared plan of care is engagement of the family in all stages of the plan’s development.

A trusting, collaborative family-professional partnership must be central to the creation and maintenance of a shared plan of care. Members of the medical home team must engage the family to clearly identify the needs and strengths of the family, and child or youth.

Family engagement in developing the shared plan of care is also necessary to successfully identify family supports, medical specialists, and community services for inclusion in the shared plan of care. This information is used to set child, youth, and family goals (including medical and social) and determine the steps needed to achieve those goals.

The resulting shared plan of care is updated periodically with the family, made available to the family, and shared with other professionals involved in the care of the child or youth.

From the American Academy of Pediatrics

What is Care Coordination? What is a Shared Plan of Care?

What is Care Coordination?

Care coordination is a patient & family-centered, assessment-driven, continuous, team-based activity designed to meet the bio-psychosocial needs of children and youth, while enhancing person & family care-giving skills and capabilities. But what does that mean?

What is a Shared Plan of Care?

A shared plan of care is a document that a family and their child’s care neighborhood can use to keep everyone working together as a child grows. Learn more about this essential communication tool.

How to get a Shared Plan of Care

A good first step towards finding quality Care Coordination and beginning to develop a Shared Plan of Care is to ask. Ask others: Ask primary care, ask specialty care, ask other providers, ask families who have found such help.

How to use a Shared Plan of Care

A shared plan of care used to support a child with a special health care needs will grow and change as it is used across the care team . Learn more about how to best use a shared plan of care.

Setting Goals

Working as a team to understand the whole child, their medical needs, and family goals ensures that each family is able to move forward in the daily care of their children. Learn more about setting goals in a shared plan of care.

 

Learn more about Care Coordination and Shared Plans of Care by watching this short videos.  Note: the topic information will load automatically after the completion of the previous video.

Watch for more information about Shared Plans of Care in future posts.

 

 

Medicaid is Vital for Children and Youth with Special Health Care Needs

Medicaid is an “entitlement” program, which means that anyone who meets eligibility rules has a right to enroll in Medicaid coverage. It also means that states have guaranteed federal financial support for part of the cost of their Medicaid programs.

Medicaid funding is a shared responsibility between the federal government and the state government.

To receive federal funding, states must cover certain “mandatory” populations: low-income families and individuals, including children, uninsured children parents, pregnant women, seniors, and people with disabilities. States may also offer coverage for “optional” populations including “carve-out” waivers; such as in Colorado the CES and SLS Waivers. These are Medicaid waivers that provide home and community based services for eligible individuals who are screened under the criteria necessary. They allow beneficiaries to receive long-term health care benefits at home or in community settings outside of institutional settings

 

If Medicaid becomes a “block grant” that means that states would receive a set funding level. This could have devastating effects on providing health care to those in need and includes not adequately paying providers.

If Medicaid becomes a block grant, it would be difficult for the state to provide adequate coverage for our most vulnerable populations, whether they be income eligible or eligible through a waiver. At this moment, the waivered services could go away. Meaning, unless you are income eligible, you could potentially lose the very services that assist you and your family.

What could be lost if Medicaid were to become a “block grant”?

  • Some services in Early Intervention
  • EPSDT (Early Periodic Screening, Diagnostic and Treatment) the safety net for children under Medicaid, if medically necessary must be covered by Medicaid.
  • Put newborns disproportionality in harm
  • Loose or reduced coverage under Home and Community based Waivers
  • Respite Care
  • Speech, Occupational Physical Therapy (including those accessing special education related services
  • Nursing care
  • Prescriptions
  • Personal Care and In-home Supports
  • Provider rates may be cut even more
  • Institutionalization would likely increase
  • Acute care services, such as hospitalization
  • Many would lose all access to health care
  • Caps may happen on enrollment
  • Increasing waitlists
  • Quality of Life
  • Some Nursing Home Care
  • Eliminate current spousal impoverishment
  • Could eliminate mental health services
  • Increase Welfare System
  • Other Therapeutic Care
  • X-rays and Lab tests loss
  • Durable Medical Equipment
  • Eliminate Medicaid Expansion

For many; Medicaid is a “Lifeline”

  • About 4 % of Children and Youth with Special Health Care Needs – 6.3 million – rely on Medicaid or CHIP. (For about 8 percent of these children, Medicaid supplements private insurance, covering services and items not covered by their private plan, such as eyeglasses, hearing aids, and assistive devices.)
  • Medicaid allows Children and Youth with Special Health Care Needs to get the medical treatment, medications, equipment, therapies, and other services and supplies they need to stay as healthy as possible, thus avoiding excess and costly hospitalizations or ER visits.
  • Medicaid covers early and periodic screening, and diagnosis and treatment of developmental and health problems early in a child’s life, helping to avoid more expensive treatment or special education later on.
  • Medicaid protects families of Children and Youth with Special Health Care Needs from extraordinary medical debt or bankruptcy.
  • Medicaid allows some parents to work and pay taxes by providing home health care for seriously ill children who need it.

If Medicaid is subject to per capita caps or block grants, states will have less money in the long run, forcing them to significantly reduce Medicaid coverage and/or services. Moreover, they will not be able to respond to outbreaks (like microcephaly from the Zika virus), or to cover new diagnostic methods, treatments or medications; with block grants states also will be unable to respond to economic downturns.

Other considerations that would have an effect if a Medicaid Block Grant would take place is states would no longer have these options for the long term: Creating the Community First Choice Option– allows States to provide home and community-based attendant services and supports to eligible Medicaid enrollees under their State Plan.

Extending the Money Follows the Person Rebalancing Demonstration– allows Medicaid funding (services) to follow a person from an institutional setting to housing in the community. Even though these services are provided by different entities, the Medicaid funding pays for the costs of services in the community.

Creating the Balancing Incentives Program provided financial incentives to States to increase access to non-institutional long-term services and supports (LTSS) in keeping with the integration mandate of the Americans with Disabilities Act (ADA), as required by the Olmstead decision.

Current talks on Medicaid reform if it is moved to a block grant, could lose $800 billion over ten years, seriously affecting children with disabilities without having any coverage.

Affordable Care Act (ACA) – Many provisions of the ACA are being looked at to be repealed and replaced. These changes may not only affect the ACA and Marketplace policies but also could impact employer based policies.

The ACA’s consumer protections and benefits are of particular importance to the 53.3 percent of Children and Youth with Special Health Care Needs (7.7 million) with private insurance. 

ACA benefits that are being reviewed to possibly be eliminated include:

  • Protections for children with pre-existing conditions, without which they would never be able to get insurance, would be charged higher premiums, and/or would be denied coverage for their pre-existing conditions.
  • Elimination of annual and lifetime benefit caps, and caps on out-of-pocket expenditures, ensuring that children can get the care they need without imposing unsupportable costs on their families.
  • Allowing young adults to stay on their parents’ insurance policies until age 26, and providing Medicaid to former foster children until age 26.
  • Critical health benefits, including “habilitation” services needed to acquire and maintain skills (g., physical therapy for children with cerebral palsy so they can learn to walk, or speech therapy for children with hearing impairments). The ACA also ensures that children get critical oral and vision care and behavioral health services.
  • No-cost preventive care, including check-ups and screenings to detect and treat health or developmental problems early in a child’s life, helping to avoid more expensive treatment or special education later on.
  • Medicaid expansion to all individuals with incomes up to 138% of the federal poverty level, which helps young adults and others with chronic illnesses or disabilities who do not have access to employer-based insurance.

 The ACA provides non-discrimination provisions for all insurance policies. If repealed, the loss would be drastic and could include:

  • Bans the exclusion of people from health insurance coverage based on pre-existing conditions
  • Prevents insurers from charging people with disabilities and health conditions significantly more for health insurance coverage
  • Prevents insurers from charging people with disabilities and health conditions significantly more for health insurance coverage

Replacement being considered would:

*Gut the protection against health insurers hiking premiums for people with pre-existing conditions by repealing the “community rating” provision.

*Allow insurance companies to charge more for those with pre-existing conditions, or force enrollees to enroll in High Risk pools. These High Risk Pools are often unaffordable for families to pay for.

*Eliminates the prohibition on health insurance companies putting annual or lifetime limits on how much they pay for care.

*Keeps the provisions that raise premiums for older individuals, lower tax credits, eliminate cost-sharing reductions.

Currently, the ACA provides an essential benefit package, that unless the plan you are on was grandfathered in, most insurance companies have adopted these benefits. These are:

Outpatient services

Emergency services

Hospitalization

Maternity and newborn care

Mental health and substance use disorder services, including behavioral health treatment

Prescription drugs

Rehabilitative and habilitative services and devices, laboratory services

Improves accessibility of medical diagnostic equipment

Preventive and wellness services and chronic disease management. Cancer screenings such as mammograms and colonoscopies, Blood pressure and cholesterol screenings, Tobacco cessation counseling and interventions, vaccinations

Replacement being considered would allow states to waive or remove the essential health benefit requirements so insurers wouldn’t have to cover hospitals, doctors, prescriptions, lab tests, mental health, maternity and newborn care, and care for substance use disorders.

These are dangerous considerations that will affect all of our families of children and youth with special health care needs as well as adults with disabilities.

Family Voices Colorado is gathering stories from families to provide as education to our members of Congress. If you would like to write a short story on how these changes would affect your family, please email with a picture to tom@familyvoicesco.org

By sending your story, you are granting permission to submit your story to members of Congress.

Making Colorado a better place for children and youth with special health care needs