Purpose
Create a national framework ensuring that an adult with lifelong intellectual or developmental disabilities and significant mental-health or behavioral needs does not lose housing, care, benefits, or community placement simply because an aging parent can no longer provide care.
Families should not have to wait for a parent to become seriously ill or pass away before figuring out where their loved one will live, who will provide care, and how their needs will be met.
The goal is to replace crisis-driven decisions with lifelong planning, stable support, and real choices for individuals and their families.
Lifetime Support Plans
Every eligible adult would have the right to develop a voluntary Lifetime Support Plan.
The plan would identify:
- preferred living arrangement;
- medical providers;
- psychiatric and behavioral-health providers;
- medications;
- communication needs;
- daily support needs;
- transportation;
- employment and day activities;
- benefits;
- financial arrangements;
- decision-making arrangements;
- emergency contacts;
- backup caregivers;
- housing preferences;
- crisis procedures;
- long-term arrangements if the primary caregiver dies or becomes unable to provide care.
The plan would belong to the individual, not to a particular agency or provider.
Planning for Aging Caregivers
Federal funding would help states identify families in which an adult with significant intellectual or developmental disabilities lives with an aging caregiver who provides substantial daily assistance.
Families would receive transition planning before a crisis occurs.
The program would specifically address situations in which an elderly parent remains the primary caregiver for a middle-aged or older disabled adult.
Families should have time to plan, make choices, visit potential housing, establish support relationships, and prepare for a future transition.
Integrated Disability and Mental-Health Support
States would establish specialized community teams for people with co-occurring intellectual or developmental disabilities and significant psychiatric or behavioral needs.
Teams could include:
- developmental-disability specialists;
- psychiatrists;
- psychologists;
- nurses;
- behavioral specialists;
- social workers;
- housing specialists;
- primary-care providers.
The goal would be to prevent people from being passed back and forth between the developmental-disability and mental-health systems.
Individuals with complex needs should receive coordinated care from a system that understands the whole person.
Community Crisis Stabilization
States receiving federal funds would establish community crisis-response capacity specifically designed for people with intellectual and developmental disabilities.
When clinically appropriate, the first response to a behavioral crisis should be stabilization and treatment rather than automatic emergency-room use or institutional placement.
When hospitalization does occur, hospitals would receive support for specialized discharge planning to ensure that individuals return to an appropriate community setting whenever possible.
A Continuum of Housing Choices
Federal housing and Medicaid programs would be coordinated to expand a range of community-based living options, including:
- supported independent apartments;
- small supported residences;
- shared-living arrangements;
- accessible apartments with visiting support;
- support provided in the family home;
- higher-support community residences.
No individual or family should have to choose between an aging parent continuing to provide unsustainable levels of care and institutional placement.
The objective would be to create meaningful choices that reflect each person's abilities, preferences, and support needs.
Strengthening the Direct-Support Workforce
Medicaid home- and community-based services reimbursement would be strengthened to improve compensation, training, recruitment, and retention of direct-support professionals.
Federal funding would support:
- higher reimbursement;
- paid training;
- career advancement opportunities;
- certification;
- respite coverage;
- additional staffing capacity;
- incentives for underserved and rural communities.
States would be required to demonstrate that increased federal funding is translating into improved workforce capacity and more reliable access to services.
A community-based system cannot function without the people who provide daily support.
Respite for Family Caregivers
Eligible family caregivers would receive a defined annual respite benefit.
Respite could include:
- in-home support;
- short-term residential care;
- weekend programs;
- emergency backup care.
The purpose would be to give caregivers time to rest, address their own health and responsibilities, and continue providing care without reaching the point of exhaustion or crisis.
Respite should be viewed as prevention, not simply as an additional benefit.
Emergency Backup Care
Every participant in a Lifetime Support Plan would have an identified emergency arrangement.
If the primary caregiver:
- becomes hospitalized;
- dies;
- experiences an incapacitating event; or
- otherwise becomes unable to provide care,
the individual would have a predetermined emergency pathway.
Families should never have to discover the available options for the first time in the middle of a medical emergency or after the death of a parent.
Benefits and Financial Protection
Federal agencies would establish coordinated assistance for:
- SSI and SSDI;
- Medicaid;
- Medicare, where applicable;
- housing assistance;
- special-needs trusts;
- ABLE accounts;
- guardianship and supported-decision-making arrangements.
Families would receive a coordinated benefits review rather than having to independently navigate multiple agencies and programs.
The objective would be to help families understand the resources available to them and protect the individual's eligibility for essential benefits.
National Accountability and Data
States would report standardized information concerning:
- waiting lists;
- caregiver age;
- residential placements;
- emergency placements;
- psychiatric hospitalization;
- institutionalization;
- workforce vacancies;
- workforce turnover;
- service denials;
- unmet housing needs.
The federal government would publish an annual report identifying where the largest service gaps exist.
What gets measured should help determine where resources and reforms are needed most.
A Predictable Transition for Families
The central principle of this plan is simple:
A person's lifetime disability support should not collapse because the person who has been holding the system together—the parent—gets old.
Parents should not have to spend their later years wondering what will happen to their son or daughter when they can no longer provide care.
Adults with lifelong disabilities should have a plan that follows them throughout their lives, regardless of which caregiver, agency, or provider is involved.
Building a System Before the Crisis
This plan would shift the focus from emergency intervention to advance planning.
Instead of waiting for:
- a caregiver's hospitalization;
- a parent's death;
- a behavioral-health crisis;
- an emergency-room visit;
- a housing loss; or
- an institutional placement,
families and states would have a system for planning ahead.
The goal is straightforward:
Replace predictable crises with predictable systems of support.
Every adult with significant lifelong disabilities deserves stability, dignity, community, and a future that does not depend entirely on how long an aging parent is able to keep going.
Aurora Stuski for Congress
Fighting for Berks and Montgomery Counties