Petition to Address Financial Hardships for Families Raising Children with Special Needs and Severe Disabilities We call upon our leaders to address the profound financial hardships faced by families raising children with special needs and severe disabilities.

I am writing to you as a parent, advocate, and proud Texan who, like thousands of others, is facing immense challenges in caring for a child with severe disabilities. The current system fails to address the significant financial and emotional hardships families endure while striving to provide their children with the care they need and deserve. I urge you to consider the following concerns and support reforms that can bring meaningful change to countless families across our state and nation.

The Problem: Denial of Services Based on Parental Income
Many families, including my own, are denied essential services such as Medicaid and Supplemental Security Income (SSI) due to income thresholds that fail to account for the extraordinary costs associated with raising children with disabilities. These costs encompass:

Life-saving medications
Constant medical monitoring
Regular therapy sessions (physical, occupational, and speech)
Specialized equipment and care
Surgeries and adaptive devices

Despite having private insurance, my family is denied Medicaid and SSI because our income exceeds the eligibility limits. However, these limits do not account for the high out-of-pocket expenses we face, which have forced us to max out all lines of credit. As a result, our son, who has epilepsy, cerebral palsy, legal blindness, and developmental delays, is unable to receive critical therapies and life-changing surgeries.

The Impossible Choices Families Face
Families like mine are left with few options, many of which come at great personal and financial cost:

Divorce or Separation to Qualify for Benefits: Some families feel forced to separate to reduce household income and qualify for Medicaid and SSI, destabilizing the family unit.
Financial Strain from Single-Income Households: Others rely on one income while a parent provides full-time care. Even then, many do not qualify for assistance, leading to emotional and financial stress.
Caregiver Health Consequences: Constant caregiving takes a toll on parents’ health. If a caregiver becomes incapacitated, the child may face institutionalization—a costly and emotionally damaging outcome for the family and the state.

Additional Financial Burdens of Private Insurance
Private insurance coverage is often inadequate for the needs of children with disabilities. Families pay high premiums, deductibles, and copays, yet essential services such as therapies and specialized dental care with sedation are not covered. For example, due to my son’s epilepsy, routine dental procedures require sedation, costing up to $2,000 out-of-pocket. Such costs are insurmountable for many families.

Systemic Issues and Policy Failures

Strict Eligibility Restrictions: Medicaid’s income limits in Texas (approximately $42,400 for a family of four) exclude middle-income families with disabled children who still cannot afford the costs of care.

Coverage Gaps: Children often lose coverage due to administrative hurdles, leading to interruptions in critical therapies.

Debt and Delayed Care: Families acquire significant debt to cover medical expenses, delaying or forgoing necessary care when funds run out.

Policy Recommendations
To address these systemic issues, I propose the following reforms:

Needs-Based Eligibility for Medicaid and SSI: Eligibility should be determined based on a child’s medical and care needs, not solely on parental income. This would ensure critical support reaches families with the greatest needs.

Support for Caregivers: Provide financial assistance, paid family leave, and respite care to support full-time caregivers. Expanding programs like the Consumer Directed Services (CDS) option, which allows families to hire and manage their own caregivers, would also help alleviate caregiver strain.

Adjust Income Thresholds: Increase income limits for Medicaid and SSI to prevent families from making harmful financial decisions, such as divorce or taking on unsustainable debt.

Insurance Coverage for Sedation in Dental Care: Mandate that private insurers cover sedation for children with severe medical conditions, like epilepsy, during dental procedures, ensuring safety and reducing financial burdens.

Enhanced Medicaid Waiver Programs: Address the excessively long wait times (16+ years) for programs such as CLASS, HCS, and MDCP. These delays deny children timely access to life-changing interventions.

We Call on Our Leaders to Act Now:

The current system is failing families like mine, along with the thousands of disabled children in The State of Texas. By forcing us to make impossible choices that harm both caregivers and children. By implementing needs-based eligibility for Medicaid and SSI, supporting caregivers, and addressing insurance and waiver program shortcomings, we can provide the necessary support for families without compromising financial stability or family unity.

I urge you to take action on this critical issue. Families raising children with disabilities need your support to ensure their children receive the care they deserve. Together, we can create a system that uplifts and empowers our most vulnerable citizens.