CES Fact Sheet to Education oneself on the waiver

You must know the info better than anyone, and advocate.

By Maureen Welch, Mom of 11 Year old on CES 720-436-4121 mpwelchco@gmail.com 

1. General info on CES

  •  CES is Childrens Extensive Support Waiver. It comes with state plan Medicaid (Medical and approved therapies like ABA, Speech, Occupational therapy, Physical therapy and behavioral health through county Behavioral Health Organizations (BHO) or places that accept medicaid (like Childrens, Childrens outpatient mental health).
  • There are many children waivers, here is the chart link https://www.colorado.gov/pacific/sites/default/files/CO%20HCBS%20Children%20Waiv er%20Chart-August%202016.pdf
  •  State link for CES general info. Excellent starting place https://www.colorado.gov/pacific/hcpf/childrens-extensive-support-waiver-ces
  • Once a waiver slot has been awarded a person, the development of an Annual service plan occurs.
  • You determine services needed and units, for your budget (CES is about $38K, no levels)
  • ABA and Behavioral strategies ARE recently through state plan, via EPSTD. Costs for behvaioral therapy is not deducted from annual waiver budget, it bills like physical, speech or occupational therapy and requires use of approved providers.
  • https://www.colorado.gov/pacific/hcpf/pediatric-behavioral-therapies It was suggested to call smaller approved EPSTD Behavioral providers on this link, updated often. https://www.colorado.gov/pacific/hcpf/pediatric-behavioral-therapies-provider-list
  • There is a maximum annual CAP on assisted technology and home modification.  One can always ask for the state to consider extraordinary circumstances as well.  
  • Always ask for citations if you are denied something. The waiver is from federal Center for Medicaid Medicare Services and the state must rely on it for ultimate guidance. Its long but outlines all approved services.
  • Colorado’s waivers are up for reapproval in 2019. Most are impressed if you mention that you understand the CES waiver document. This document outlines services and any limits. https://www.colorado.gov/pacific/sites/default/files/HCBS- CES%20Waiver%20%28CO.4180.R04.00%29.pdf
  • Do not rely on case managers or supervisors, go with your gut. The case managers are good people, who only know what they are trained. Over the course of time, you will educate many of them. 
  • You can always go up food chain with questions and ask with a smile “Can you  please cite where that is in policy, rules, regs or the CMS waiver?” This might stump then but keep asking Why? Don’t accept the “this is how it is done” as I discovered they were wrong many times trying to say “only X amount of hours a week are allowed”.
  • Top gal on CES waiver is Sheila Peil at the state, Division of Developmental Intellectual Disabilities DIDD which sits at Health Care Policy and Finance department (HCPF). They pay the agencies and CCBs. Sheila Peil can be ccd at this email if you hit a roadbump but best to go up internal CCB foodchain before ccing her on emails. sheila.peil@state.co.us
  • CCBs bill your plan up to $3,800. a year for Targeted Case Management, also in units of 15 minutes each. They are to write your plan (like an IEP it guides a plan year of services). You can re-adjust your plan anytime you want by calling a meeting with your case manager. This is your right. Many will tell you can wait, but again, you can reallocate anytime. For example, needs change or your providers’ availability changes. Funds are per year.
  • Beware most CCBs have sister or affiliate companies and may suggest them, but you have right to choose from any approved PASAs (Program Approved Service Agency). They can bill Medicaid directly or use the CCB to bill as a service, at a cost.
  • RFP Request for Proposals- these are sorta the only thing Case Managers offer to do for finding providers. Most busy providers don’t need to do RFPs so my experience has been you get the ones who have openings for a reason, and larger PASAs with many admins versus smaller, leaner PASAs busy serving their clients.

2. Parent Paid CNA is a different bucket of money, through a home health agency, based on medical need. Not waiver $. Must have Medicaid state plan. In Home Support Services (IHSS). If you get many hours of CNA this way, it could impact your respite in CES via a “cap”. One way to avoid this is to use the Community Connector category instead of respite. Many small PASAs cannot offer respite anyway due to the required and expensive liability policy. Read more here: https://www.colorado.gov/pacific/cdphe/parents-their-childs-certified-nursing-aide-cna

3. Medicaid State plan (medical NOT waiver) has behavioral therapy now! This is based on medical need, not diagnosis or waiver. Must use an approved agency who has signed contract.  Read more here: https://www.colorado.gov/pacific/hcpf/pediatric-behavioral-therapies

4. Link to CES rates and service- RATE SCHEDULE

  • Note rates are by unit, which is a 15 minute segment.
  • Large agencies take up to 60% overhead off of the stated pay/ unit rate.https://www.colorado.gov/pacific/sites/default/files/HCBS%20DD%20SLS%20TCM%20CES%202017-2018%20Rate%20Schedules%20DEC2017%20v2.pdf
  • Note respite pay is very very low and unless it is a provider you know, most won’t work for that. Many families use Community connector as it is higher and includes ability to transport your family member. 
  • All waiver rates are in same document, so CES is only on last two page, 10 & 11.
  • Know the rates and one CAN NEGOTIATE with a PASA on a end rate for your provider (esp if you say “I think 60% from my hourly rate is excessive and I am interviewing PASAs to bring my business. Could you do 40%?” Most parents don’t know the billing rate to speak on this, but you do!)

4. PASA list (approved agencies- look for your CCB # on legend, and then across to see your service, note some PASAs are family/micro and only serving their loved one or a small #, so if you call or email around, some may not answer). https://docs.google.com/spreadsheets/d/1H6wku9Zgoxov_MoX7qD0RMu2glFYy3T4b5Z2-_JOmsg/edit#gid=459370783

5. How I found providers- my best source is Care.com. 

  • It costs money to join, but I have not had luck on other sites that are free. Think with  coupon code I paid $100 for 9 months or a year? 
  • I have always found my providers, and then after my own vetting, then take to PASA for hire. 
  • It is a bit like internet dating, you need to write a good job description and post it, for others to read and reply to. Tweak it once in a while. 
  • An emotional job title including days, times and rates. “Make a difference in a child’s life, weekday daytime home education, part or full time, $15 hr.” 
  • I realize most folks need to make a living so some flexibility needed for times and rates, I say cast your net and then if you get a good catch, work with their needs.
  • If they reply, I ask them to send me an email with resume and references, that I do a meet and greet, call references, and then a few short kid-sits to get a feel for a match.
  •  I do some initial respite, cash shifts, and then if I am ready to hire through our PASA, I ask the PASA to do a joint interview, and can make the job offer.
  • Some PASAs will do more candidate recruitment, but know their overhead might be higher.

6. More about PASAs- or the agency you use for billing Medicaid. 

  • Getting a PASA open to you finding providers (assuming you will help) is key  
  •  If you want PASA to do the Human Resources, ask how they do that and their turnover. 
  • Ask for families who use their services, and call for reference to PASA.
  • You can change a PASA if it doesn’t work out, through a service plan meeting with case manager. Try to choose carefully as you might not be able to take that employee with you, if they work for other families in that PASA. Also if you do take your provider, there may be additional training and costs associated with a move.
  • Your PASA choice is a bit like entering a marriage- research and know what they will and will not provide.
  • You can also become your own PASA. It takes between 6 months to a year and much paperwork, and much overhead of insurance and development of policies and procedures. It is an option many are taking as then the overhead is reduced but it is running a business.
  • Eventually the hope is for Consumer Direction, something advocates are working on. This means your budget could be used to direct hire help without an agency (or related overhead). We hope this is more of an option but one can see the agencies and their lobbyists don’t care to give up a nice piece of business with the current model. Change is hard and slow.

7. Other supports

  • Arc local chapters have advocates free of charge, know they have large caseloads
  • Local County mental health agencies provide Medicaid supports, also Childrens
  • Behavioral seems to have outpatient services now clinical
  • Parent to Parent resources online, also a yahoo group list serv , realize over 2,000members and not totally secure, careful what you post
  • PEAK parent resource center in Col Springs, Federal mandated resource center
  • THRIVE parent resource center Denver/Aurora
  • Autism Society Resources- they also have paid advocates for hire
  • South End Metro Denver Independent Mental Health support group Excellent leader Carol Villa Knows the systems  contact Maureen for contact  info mpwelchco@gmail.com
  •  Empower parent support group North Side of Metro Denver Yahoo group, also face to face support groups with childcare for children with advance notice. http://www.abilityconnectioncolorado.org/empowercolorado/