NY Medicaid Waivers and Financial Assistance for Cerebral Palsy Families

The Financial Reality of Raising a Child with Cerebral Palsy

The lifetime cost of caring for a child with cerebral palsy can be substantial. According to the Centers for Disease Control and Prevention (CDC), the average lifetime cost for a person with cerebral palsy is approximately $1 million (in 2003 dollars, adjusted for inflation this would be significantly higher today). This includes:

• Medical care: Doctor visits, surgeries, hospitalizations, medications.
• Rehabilitation: Physical therapy, occupational therapy, speech therapy -- often needed multiple times per week for years.
• Assistive devices: Wheelchairs, braces, standing frames, communication devices -- and their replacement over time.
• Home modifications: Ramps, accessible bathrooms, widened doorways, lifts.
• Accessible transportation: Accessible vehicle and transportation services.
• Caregiver support: Professional caregivers (home health aides, nursing assistants).
• Special education: Specialized educational services and supports.
• Vocational rehabilitation: For individuals who may work in a reduced-capacity role.
• Psychological support: Counseling and psychiatric care for the child and family.

Medicaid in New York: The Foundation

Medicaid is the primary payer for long-term services and supports for people with disabilities in New York. Unlike private health insurance, Medicaid covers long-term care (including home care, personal care, and residential services) that private insurance typically does not cover.

In New York, Medicaid eligibility for children with disabilities is based on: - Financial eligibility: Based on family income and resources. However, New York has a "Tax Equity and Fiscal Responsibility Act" (TEFRA) option (also known as the "Katie Beckett" option), which allows children with disabilities to qualify for Medicaid based on their own income and resources, regardless of family income. This means that even children from higher-income families can qualify for Medicaid if they meet the disability criteria. - Disability criteria: The child must have a disability that meets the Social Security Administration definition of disability for children.

Medicaid in New York covers: - Doctor visits and hospital care - Prescription medications - Medical equipment (durable medical equipment) - Physical, occupational, and speech therapy - Personal care services (home health aides) - Private duty nursing - Medical transportation - Mental health services - Dental and vision care

Families should apply for Medicaid as early as possible, as it can take time to process applications and determine eligibility.

OPWDD Home and Community-Based Services (HCBS) Waiver

The Office for People With Developmental Disabilities (OPWDD) administers the Home and Community-Based Services (HCBS) waiver in New York. This waiver allows New York to use Medicaid funds to provide services in the community (rather than in institutions) for people with developmental disabilities, including cerebral palsy.

The HCBS waiver provides services that are not covered by regular Medicaid, including:

• Service coordination (care management): A service coordinator (formerly called a Medicaid Service Coordinator or MSC) helps the family navigate the service system, develop a service plan, and access services.
• Community habilitation: One-on-one support to help the individual develop skills for independent living, community integration, and daily activities.
• Day habilitation: Structured programs that provide skill development, socialization, and community integration during the day.
• Respite care: Short-term care for the individual, providing relief for family caregivers.
• Family support services: Including family reimbursement (for out-of-pocket expenses not covered by other sources), family support services, and family training.
• Supported employment: Help finding and maintaining employment, with job coaching and support.
• Residential services: Including supported apartments, intermediate care facilities (ICFs), and individualized residential alternatives (IRAs).
• Adaptive technology and environmental modifications: Assistive technology and home modifications that are not covered by Medicaid.
• Specialized medical equipment: Equipment not covered by Medicaid.

To Access OPWDD Services

To access OPWDD services, families must:

1. Register with OPWDD: Contact the local OPWDD regional office (or the New York City office for NYC residents) to register.

2. Establish eligibility: OPWDD will determine whether the individual meets the eligibility criteria for developmental disability services. This requires documentation of the disability (including medical records, psychological evaluations, and IEPs).

3. Enroll in the HCBS waiver: If eligible, the individual can enroll in the HCBS waiver, which requires Medicaid eligibility.

4. Develop a service plan: A service coordinator will work with the family to develop a personalized service plan (called a Life Plan).

5. Access services: Once the plan is developed, services can be accessed through OPWDD-funded providers.

The OPWDD system can be complex, and families may benefit from working with an experienced service coordinator and advocacy organizations (such as the Cerebral Palsy Associations of New York State).

The New York Medical Indemnity Fund (MIF)

For families whose child cerebral palsy was caused by medical malpractice, the New York Medical Indemnity Fund (MIF) can be a critical source of financial assistance. The MIF is a state-administered fund that pays for the lifelong medical care, rehabilitation, and support services of children who suffer neurological birth injuries (including cerebral palsy) due to medical malpractice.

To be eligible for the MIF: - The child must have suffered a neurological birth injury caused by medical malpractice. - The child must have been born in New York State. - The child must have been born on or after April 1, 2011. - The child must have had a birth weight of at least 1,400 grams. - The malpractice must be established through a settlement, judgment, or arbitration award.

The MIF pays for future medical care, rehabilitation, and support services as they arise, for as long as the child lives -- with no risk of fund exhaustion.

[Link to: /birth-injury/medical-indemnity-fund]

Supplemental Security Income (SSI)

Supplemental Security Income (SSI) is a federal program that provides monthly cash payments to people with disabilities, including children. In New York, the state provides a supplement to the federal SSI payment.

To qualify for SSI for a child with cerebral palsy: - The child must have a disability that meets the Social Security Administration definition of disability for children (marked and severe functional limitations that have lasted or are expected to last at least 12 months). - The family income and resources must be within the SSI limits.

SSI payments can help with basic living expenses, and SSI eligibility often comes with Medicaid eligibility.

Families should apply for SSI as early as possible, as the application process can take several months.

Early Intervention Program (EIP)

The Early Intervention Program (EIP) is a New York State program that provides services to infants and toddlers (birth to age 3) with developmental delays or disabilities, including cerebral palsy. The EIP is administered by the New York State Department of Health, through local counties (or the New York City Department of Health and Mental Hygiene for NYC residents).

EIP services are provided at no cost to families and include:

• Evaluation: Comprehensive evaluation to determine eligibility and service needs.
• Service coordination: A service coordinator helps the family navigate the system and access services.
• Physical therapy
• Occupational therapy
• Speech therapy
• Special instruction (early childhood education)
• Assistive technology
• Nutrition services
• Social work services
• Vision services
• Hearing services
• Family training and counseling
• Medical services (for diagnostic and evaluation purposes only)

Preschool Special Education (CPSE)

When a child turns 3, they transition from the Early Intervention Program to the Committee on Preschool Special Education (CPSE), which is administered by the local school district. The CPSE develops an Individualized Education Program (IEP) for the child, which outlines the special education and related services the child will receive.

Preschool special education services can include: - Special education itinerant teacher (SEIT) - Related services (physical therapy, occupational therapy, speech therapy, counseling) - Assistive technology - Special transportation - Half-day or full-day special class

When the child enters kindergarten, they transition to the Committee on Special Education (CSE), which continues to develop and implement the IEP throughout the child school years.

Families should work closely with their school district CPSE/CSE to ensure that their child receives the services they need. [Link to: /cerebral-palsy-lawyer/special-education]

New York State of Health Marketplace

The New York State of Health Marketplace is the state health insurance exchange, where families can purchase health insurance (including private insurance and Child Health Plus). Families may also be screened for Medicaid eligibility through the Marketplace.

Child Health Plus is a New York State program that provides health insurance to children under 19 who are not eligible for Medicaid. Child Health Plus covers doctor visits, hospital care, prescription medications, dental and vision care, and other services. Premiums are based on family income, and some families may qualify for free coverage.

Families who do not qualify for Medicaid may still qualify for Child Health Plus or subsidized private insurance through the Marketplace.

Other Financial Assistance Programs

Other financial assistance programs for New York families of children with cerebral palsy include:

• Cerebral Palsy Associations of New York State: Non-profit organizations that provide services, advocacy, and support to individuals with CP and their families.
• Parent to Parent of New York State: A non-profit that connects parents of children with disabilities for support and information.
• Independent Living Centers: Non-profit organizations that provide services and advocacy for people with disabilities.
• Vocational and Educational Services for Individuals with Disabilities (VESID): Now part of the New York State Education Department Adult Career and Continuing Education Services (ACCES), this program provides vocational rehabilitation services for individuals with disabilities.
• Office of Children and Family Services (OCFS): Provides various services for children and families, including some services for children with disabilities.
• Local county departments of social services: Administer Medicaid and other assistance programs.
• Non-profit organizations: Including United Cerebral Palsy, Easterseals, and other organizations that provide services and financial assistance.

How a Cerebral Palsy Settlement Interacts with Benefits

If your child receives a cerebral palsy settlement or verdict (from a malpractice lawsuit), it can affect their eligibility for government benefits:

- Medicaid: Medicaid has strict income and resource limits. A settlement received directly by the child can disqualify them from Medicaid. - SSI: SSI also has strict income and resource limits. A settlement can disqualify the child from SSI. - OPWDD HCBS waiver: The waiver requires Medicaid eligibility, so if the settlement disqualifies the child from Medicaid, they can lose OPWDD services.

To preserve government benefits eligibility, settlements are typically structured using: - Special needs trust (SNT): A trust that holds the settlement proceeds for the child benefit, without disqualifying them from government benefits. The trust assets are not counted as the child resources for Medicaid and SSI eligibility purposes. - Structured settlement: A settlement paid as periodic payments (funded by an annuity), which can be directed to a special needs trust. - MIF benefits: If the child is eligible for the MIF, the MIF pays for future medical care -- preserving the settlement for non-medical needs. [Link to: /birth-injury/medical-indemnity-fund]

Special Needs Trusts

A special needs trust (SNT) -- also known as a supplemental needs trust -- is a legal arrangement that allows assets to be held for the benefit of a person with disabilities without disqualifying them from government benefits.

There are two main types of SNTs for individuals under age 65: - First-party (self-settled) SNT: Funded with the child own assets (including settlement proceeds). The trust must include a "payback" provision -- when the child dies, the trust must repay Medicaid for the cost of care provided. - Third-party SNT: Funded with assets from someone other than the child (e.g., parents or grandparents). No payback provision is required.

A SNT can pay for things that Medicaid and SSI do not cover, including: - Personal care items - Recreation and entertainment - Travel - Education - Home furnishings and electronics - Companion services - Legal and advocacy services

An experienced special needs planning attorney can help establish and administer a SNT. At MDLaw Firm, we work with families and their financial advisors to structure settlements to preserve government benefits eligibility.

How MDLaw Firm Can Help

At MDLaw Firm, we help families navigate both the legal and financial aspects of cerebral palsy:

• Malpractice claims: We pursue medical malpractice claims for birth injuries that caused cerebral palsy, working to obtain compensation for medical expenses, pain and suffering, and lifetime care costs. [Link to: /cerebral-palsy-lawyer/new-york]
• Life care planning: We engage life care planners to project the child future care needs. [Link to: /cerebral-palsy-lawyer/life-care-plan]
• MIF structuring: If the child is MIF-eligible, we structure the case to ensure MIF benefits. [Link to: /birth-injury/medical-indemnity-fund]
• Special needs trust establishment: We work with families and their financial advisors to establish special needs trusts that preserve government benefits eligibility.
• Structured settlements: We structure settlements to provide guaranteed, tax-free payments for the child lifetime.
• Resource navigation: We help families connect with OPWDD, Early Intervention, special education, and other programs (though we are a law firm, not a benefits agency).

Frequently Asked Questions

The value of a medical malpractice case in New York depends on several factors, including the severity of the injury, the strength of liability evidence, and the economic and non-economic damages involved. New York is one of the few states with no caps on medical malpractice damages, meaning there is no artificial limit on what you can recover. Below are typical settlement ranges based on injury severity.