Share of Cost Advisory

Many members of the disability community are getting new “Share of Cost Letters”

These letters are saying that Medicaid has changed their interpretation  of references 42 CFR 435.726

This will mean that many people will have to pay 200-500$ more per month (some cases fall outside of that range) to keep their child in care

This only applies to those who have received a letter which we believe to be around 10-15% of people in community based services


What to do if you have received a letter:

1 Talk to an attorney (we can not offer you legal advice)

Appeal the decision.  The process for appealing should be set forth in the notice you received from HHS.  You may need to do this within 10 days of the notice to keep the change from taking effect while the appeal is pending.

3 Let us know if you have received these letters. We are gathering information so the Arc of Nebraska can help advocate and educate.

4 Take a deep breath.  This is a stressful process but know that we have your back.



Edison McDonald

Executive Director

Arc of Nebraska



Here is the departments Q and A to help explain their position.


Disabled Adult Children and Share of Cost; Q&As

Q. What is a Share of Cost (SOC)?
A. A SOC is a monthly amount a beneficiary pays as a part of their benefits stemming from income greater than the state’s income limits for benefits. A SOC is incurred when a Disabled Adult Child (DAC), enters a long-term care living arrangement (nursing home, or an intermediate care facility) or are receiving Home and Community-Based Services (HCBS), which includes the Aged and Disabled Waiver and the Developmental Disabilities Waivers. A DAC’s total income is used to calculate their SOC. Total income also includes the full amount of the income received from their parent’s claim.

Q. What is a Disabled Adult Child or DAC?
A. A person who was determined disabled before age 22, who was eligible for SSI, but who has since lost their SSI benefit due to receiving Social Security income from their parent’s claim.

Q. Why does this impact us?
A. The policy impacts anyone eligible as DAC who also resides in a medical institution/long-term care facility or who are receiving Home and Community Based Services (HCBS), which includes the Aged and Disabled Waiver and the Developmental Disabilities Waivers.

Q. Why is this happening now?
A. As cases are examined and inaccuracies are found, we make changes so each citizen is receiving the correct services and/or level of services they are entitled to under the law. In hindsight, we realize we should have provided more than the standard 10-day notice for a change of this nature. Going forward, we will be taking more proactive measures to notify citizens, families, and/or guardians of changes and work with them to transition the best they can.

Q. But why did this happen now? My child/ward/etc.’s status didn’t change.
A. The change was made when we identified that your [son/daughter/ward/etc.]’s case was inaccurate. Again, we realize we should’ve provided more notice. I am here to help identify other community resources that may be available and helpful.

Q. What can we do about this? Are there any options for the state to not count this income? A. The post-eligibility calculation is federally mandatory and the state does not have an option for disregarding this income.

Q. Can individuals appeal the SOC?
A. Yes, clients can appeal any action taken on their case within 90 days of the mail date of their Notice of Action.

Q. We can’t afford this!
A. I sympathize with you and your situation. I’d like to work with you to identify other resources, such as economic assistance programs.
For individuals enrolled in managed care, their MCO may provide additional services (value add services) which could assist them.