Many patients with disabilities are kept on waiting lists for additional services.
Patients with disabilities are typically kept on Medicaid waiting lists for additional services until their primary caregiver becomes ill or dies, and some states have patients on these lists until they age out of the school system.
Approximately 860,000 people are caring for disabled patients in their home and many wait for years to receive Medicaid benefits for programs such as day services, transportation, employment, or placement in a group home, according to The Pew Charitable Trusts. The amount of older caregivers is growing as is the the need for additional assistance.
However, some patients will not receive needed assistance in a timely manner, or until they face an emergency situation. In Tennessee, there is a law that states any disabled individual with a caregiver over 75-years-old can decide where and how the individual will live after they die, according to the article.
Connecticut also passed a similar law, but the waiting lists for services in many states are large. States such as Maryland, Virginia, and Pennsylvania have all provided additional funds in order to shrink the list. The need for assistance from Medicaid for home care is vital, since a majority of patients with disabilities are not being cared for in mental hospitals or nursing homes.
This shift towards deinstitutionalized care has saved Medicaid hundreds of thousands of dollars per patient, since the cost of community-based services is $43,000, and institutionalized care ranges from $129,000 to $603,000 per year, according to the article.
In 2013, there were 198,000 patients on waiting lists for Medicaid services. Ohio and Illinois had the longest waiting lists at 41,500 and 23,000 patients, respectively. Some states, such as California, do not use waiting lists, but treatment may not be available as needed due to costs and low reimbursement.
Susan Parish, director of the Lurie Institute for Disability Policy at Brandeis University, told PEW that states should focus on providing case-management and respite services if they cannot provide all patients with care. There are currently 7600 patients with disabilities who currently lack needed services, according to the article.
To combat this, Maryland Gov Larry Hogan added $3 million last year, and $3.5 million this year to his state’s budget. Disability advocates in the state suggested new taxes to cover additional expenses, and US Representative Thomas Murt (R-PA) created several pending bills to do so.
With so many states failing to provide adequate services for this population, change is needed.