When you hear the words, “home modifications,” what usually comes to mind are those modifications related to physical accessibility, such as wheelchair accessibility, including ramps, elevators, and lifts. However, there are important modifications that are not for physical or mobility issues, but rather for individuals with developmental disabilities. For example, a person with autism who wanders may need safety locks, alarms, or wearable GPS, etc. Another individual with Prader Willi Syndrome may need cabinet and refrigerator locks. Prader-Willi Syndrome affects a child’s metabolism so that many of the children never feel full and feel like they have to eat all the time. This can unfortunately include non-food items (pica), as well. In this case, refrigerator and cabinet locks may be useful safety items. Medically fragile children may benefit from air filters, whole-house humidifiers, and emergency generators to run medical equipment. Others may need safety items like bed rails. For more information, see Home Modifications: Thinking Outside of the Box from the July 2019 issue of EP Magazine (https://reader.mediawiremobile.com/epmagazine/issues/205012/viewer?page=28).
Supportive services can help maintain an individual at home
Other creative supports can include supportive housing. This includes services for individuals with mental illness, as well as those with physical disabilities. Supportive services can include medication delivery/monitoring, meals, housekeeping, personal care, etc.
Some individuals with disabilities may need financial assistance
Financial help may come from supportive housing, Section 8, or HUD. Section 8 and Housing & Urban Development are housing programs for low-income people. They offer vouchers to help move, purchase furniture, rental help including deposit/security and lower rant, and other financial assistance. Centers for Independent Living (see Resources) may also help with moving and they also have institutional diversion initiatives. CIL helps teach independent living skills/self-advocacy for community living. These centers can help people with moving costs, groceries, utility setup etc. CIL seeks to help with independent living in the community and keep people with disabilities out of institutions.
Home care services and housekeeping
For more details on these options, see Creative Housing Options for Independent Living from the July 2017 issue of EP Magazine (https://reader.mediawiremobile.com/epmagazine/issues/201468/viewer?page=41).
In addition, new construction using universal design helps people with disabilities or even elderly individuals, to age in place. Some examples of universal design during construction might be: ramp or sloped entrance, automatic doors, elevators in homes, etc. This allows houses to be accessible to everyone regardless of age or ability.
Some communities are built specifically with people with disabilities in mind, see Project Freedom: “A Model for Independent Living in the Community in the July 2018 issue of EP Magazine (https://reader.mediawiremobile.com/epmagazine/issues/203511/viewer?page=18)
What are Home and Community Based Supports?
HCBS, or home and community-based services are supports under Medicaid. These can include personal care assistance, nursing, and other supports to keep an individual in his/her home and out of institutions, as Medicaid has progressively moved out of its institutional bias. HCBS was established because a mother, Julie Beckett, advocated for her medically fragile daughter, Katie who otherwise would have spent her entire life in the hospital. Julie demonstrated that home care on a ventilator would cost 1/6 of hospital care and keep her family together. As we go to press, sadly the disability community lost Julie this month. Due in part to Julie’s vigilance and persistence and the many other parents who followed her lead, over 500,000 children are currently being supported by Medicaid HCBS to live where they belong – in their homes and communities.
Just like Medicaid benefits, HCBS services vary by state. These can include, but are not limited to:
- in-home nursing care, equipment and supplies, (one of the most important benefits)
- case management (i.e. supports and service coordination)
- homemaker assistance
- home health aide
- personal care
- adult day health services
- habilitation (both day and residential)
- respite care
Respite is an essential support for family caregivers. According to the Caregiver Community Action Network, more people enter institutional care due to caregiver burnout than deterioration of their condition. States can propose other “services that may assist in diverting and/or transitioning individuals from institutional settings into their homes and community.”
A special note on alternatives to guardianship and maintaining independence
In years past, families thought their only option was guardianship, which takes away all individual rights. The individual with disabilities has no power to make any choices. The movement now is toward supported decision-making. The National Resource Center on Supported Decision-Making’s motto is “Everyone has the right to make choices!” The Autistic Self-Advocacy Network has a toolkit “The Right to Make Choices.”
This topic was spurred by a recent case where a parent contacted me seeking guardianship and was considering putting their teenager in a nursing home. There are other options.
In loving memory of Julie and Katie Beckett.
ABOUT THE AUTHOR:
Lauren Agoratus, M.A. is the NJ Coordinator for Family Voices, NJ Regional Coordinator for the Family-to-Family Health Information Center, and Product Development Coordinator for RAISE (Resources for Advocacy, Independence, Self-Determination, and Employment). She also serves as NJ representative for the Caregiver Community Action Network as a volunteer. Nationally, Lauren has served on the Center for Dignity in Healthcare for People with Disabilities transplant committee (antidiscrimination), Center for Health Care Strategies Medicaid Workgroup on Family Engagement, Family Advisor for Children & Youth with Special Health Care Needs National Research Network,National Quality Forum-Pediatric Measures Steering Committee, and Population Health for Children with Medical Complexity Project-UCLA. She has written blogs and articles nationally, including publications in 2 academic journals (https://pubmed.ncbi.nlm.nih.gov/?term=agoratus+l). Lauren was recently named a Hero Advocate by Exceptional Parent Magazine (https://reader.mediawiremobile.com/epmagazine/issues/207207/viewer?page=18).
Read the article here.